I don’t know how else to say this, or even where to start, but I have this nagging in my heart that won’t go away even with prayer; and maybe what I am learning during this time of prayer is something I am supposed to be sharing, for whatever reason God has.

Babies.  My heart aches for them. At least four were born of that I know this past week, and many others are growing as their mothers wait patiently for them to arrive. I see such joy in their faces (the babies, and well, the parents, too) and I rejoice in these small hands and rooting mouths and stretching bodies unsure of what is in store in this world that can be such a storm of blessings and hardships all at once.

These babies are born, and I find myself all consumed with desire that gets graciously put to sleep for short times in another corner of my heart; and yet here it is: front and center. I dream of them, I pray for them, I cry for them. I wonder if one (or more) will ever happen again to me and my family. I wonder how it can be so easy for some, and impossible for others. And then He tells me: “I was a baby, too. Some 2,000 years ago. I came for you, to satisfy your heart, your every deep longing. I was a baby, for you, and I am here right now.”

 How strange, that as my longing happens to be for a baby, I am to be preparing for One right now. I suppose if He is The King of all kings, He must be The Baby of all babies, and that thought makes me laugh. This baby, the Christ-child—He is everything I need; in His infant form and otherwise. Whether I am sick or healthy, full or needy, He is. He is what I need. And that is what Advent is teaching me in the midst of my longing and tears. I am following a baby—straight to the manger, and on to the cross. And I will get ready for this “new” baby in my life, preparing my heart, by seeing Him in others, and being Him for others; by being sorry when I need to, and letting go even if I don’t.  And when He arrives (though let’s gratefully face it, He already has) I will keep Him cradled in my heart so tenderly that it may be changed again and again; renewed as many times over as it needs; and be so full of “baby”, the most perfect baby of all, that I will want nothing more than Him, and His plans for me.

There are only 8 days left until Christmas, and there is only One Gift I am waiting for.

‘And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, "Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people. For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger." And suddenly there was with the angel a multitude of the heavenly host praising God and saying:

  "Glory to God in the highest, And on earth peace, goodwill toward men!"

 Luke 2:9-14

Hello all!

It has been too long once again in the update department. I was doing so well for so long, no news was good news (though looking back I wish I would have recorded it!)

Fast forward to the last week of October, wherein I was desperately hoping to take Jack out for Halloween again this year. After throwing up on the Monday, and having a difficult week health-wise after that, Jack had the privilege of going out with his cousin, aunt, uncle, and nana while I had to stay home. The next week got even worse: I began throwing up the Sunday night, and continued on—up to 10 times a day—for the next week. Matt came home from his shift, and after a night of listening to me and feeling helpless, he took me into the hospital.

There a bunch of tests were run, and nothing conclusive came back. I was given “magic” pills—that stopped the nausea for about a week, and helped me keep food down, until I threw up again. I have since felt nauseated, thrown up once a week since, and twice today alone. My meds are running out and I am getting nervous of a replay of a few weeks ago when I went numb and couldn’t walk from such shock to my nerves.

Prayers for this to be over would be so appreciated. I have been so far out of commission it looks like I may miss my birthday date with Matt, and I am weary. I am weary, angry, sad, and scared; that something is really wrong just when things were starting to go right. I can’t take much more of this.

Next week we go down to see our doctor to get some bigger tests done, and sometime after Christmas we will find out how far we have come in this battle against Lyme and it’s co-infections.  Until then, we pray, and thank you for yours.

Blessings and love,

Kate

The Lord watches over you—
    the Lord is your shade at your right hand;
  the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
  the Lord will watch over your coming and going
    both now and forevermore.

Psalm 121:5-8

I ended my last post with the promise of one to follow shortly. A lot has taken place since we got back from our trip down south. After I recovered from surgery, I was feeling better than I had in a long time! I had several good days, and a few that were almost normal they were so productive! Each detail, from getting out of bed and dressed, to cleaning up after myself, were triumphs; and for two days in a row, one major accomplishment after another occurred, surprising everyone (maybe me, most of all)!

Usually when I am lying in bed, something keeps me from moving. Pain; fatigue; a lack of motivation due to depression, or my body just plain telling me it can’t. But by the afternoon of Matt’s last day of vacation, as I lay there thinking, I felt a surge of motivation. Seizing it while it lasted, I got up and dressed; and after ages of being unable to (even with Matt’s assistance), I took out the sewing machine, and mended two long-awaited projects. I put it away, presented an overwhelmingly grateful child with his mended treasures, and moved on to the next thing that was on my “To Do” list: Towels. Stinky, musty, towels. I went through the entire linen closet-- smelling, tossing, and sorting as I went. When I had my pile of clean-yet-stale towels ready, I carried the load downstairs and began the process of stripping them: one full cycle on HOT with a cup of vinegar, followed by another full cycle-- this time using a ½ cup baking soda. (Side note: it worked! All but one baby washcloth was rid of its musty smell, and we have wonderfully fresh towels again! Thank-you, Pinterest! ) While waiting for the laundry to run its course, I stood at the wash basin and dyed a pair of Jack’s once-navy shorts,  getting them ready to pack them for the next child’s use. I hauled all the wet laundry upstairs, and Matt and I, along with Jack’s “help”, hung everything out on the line to dry.

Project #3: Jack’s coat hooks. We purchased wooden hooks for Jack’s room awhile back, and I

He's excited about his new coat rack, too!

really wanted to paint the knobs different primary colors before hanging them at his level (making them attractive and easier for him to pick up after himself); SO, I got them out along with the paints, and set to it! Even painting something as simple as coat hooks makes me feel all excited inside from being creative! I finished up, cleaned up the paints and my brushes, and moved on to Jack’s room. His poor dresser (once mine) had been rapidly deteriorating for months, until finally we were able to get our hands on a great deal through Kijiji. Matt moved the matching one belonging to his ‘big boy’ set upstairs from the nanny’s room (where it lived while Jack’s room was still a nursery), and set the new one up downstairs. After moving all of Jack’s clothes over, and organizing it “just so”, I got out a cloth and proceeded to dust the dresser… and then the rest of his furniture…and then on to the living room! My usual routine of being bright eyed and bushy tailed in the wee hours of the morning was not the case that day-- not after all that work! By 10:00 pm I was exhausted, and entirely satisfied with the progress I’d made.

As if the day before wasn’t productive enough, I had to be up and ready to go for my dressing change the next afternoon. My mother-in-law informed me that a presentation was being put on by the radio station to raise funds for The Canadian Lyme Foundation; and I was asked to review the interview questions. My first reaction was to balk at the idea. Anytime someone asks me about Lyme I see it as the big picture, and have difficulty putting what it is exactly into words, especially to someone who hasn’t heard of it before. It isn’t just a tick bite, or a list of symptoms to me—it is my life. My shattered hopes and dreams; my strength found again. But after reading what was already typed up, the wheels started turning, and my mother-in-law and I were able to bounce ideas off of each other. While she drove, I wrote, and by the time we returned home we had a mock up of what I would later refine and type up for her to present with a team of advocates in the coming days.

When we got home, Jack joined Mommy and Grandma to pick fresh apples-- ripe and ready to eat-- right off the tree. And after dinner, when I should have been ready to collapse for the rest of the night, I stood out on the back porch and cut my son’s hair (a task he really hates!) convincing and coercing until the job was done, and he was in the bath winding down for the night. And then, for the first time in a very long time, I was able to carry out his entire bedtime routine, to completion, all by myself. It was a taste of everything I have worked towards—my hopes slowly becoming reality, one moment at a time.

Still ticked off about his haircut!

While the monotony of reading one chore after the next may only be second to actually doing them yourself, days like the two of those (especially in a row!) come so few and far between, I relish them so! Even fragments of days like those open up the skies and let the light in a little brighter. Because some days, getting up to go to the bathroom is a chore; getting dressed seems irrelevant; and my “To Do” list? But a dream. It is so reassuring to know, in the midst of a disease that can strip one’s motivation and self-assurance, that I still am me: a hardworking, creative, nurturing person—and that reminder is a gift so great . It adds to the piercing light at the end of this tunnel; calling my name; whispering promises of what lies ahead.

My goofy boy growing up MUCH too fast!!!

And while the light is still there, beckoning me, it flickers a little further in the distance these days. For as quickly as I went from dragging my feet to dancing, I am floored once again. Last week was a week of many changes: We hired a new nanny, Jack started preschool, and I switched IV meds for the first time in almost a year. It is a precarious time: one of uncertainty, excitement, and bone-breaking pain. We are learning to let go of the old-- our beloved caregiver, Jack’s babyhood, and my growing sense of comfort; and we are moving forward into growth, new friendships, and a renewed sense of determination in this fight. Although if I am completely honest right now, after feeling so well, it is more disappointment than determination I’m feeling at the moment. So, until my feelings collide with the intentions of my meds (to kick the life out of this disease once and for all!) I will hang tight to Jesus, focus on all of the other transformations taking place, and try to see the good in all of them (like attending Jack’s first morning of preschool—mid-herx and all!)

Thank-you, as always, for your prayers. You hold a special place in ours as well!

Blessings,

Kate

“Protect me, O God, for in you I take refuge.
 I say to the Lord, “You are my Lord;
    I have no good apart from you.”

Therefore my heart is glad, and my soul rejoices;
    my body also rests secure.
 You show me the path of life.
    In your presence there is fullness of joy”

Psalm 16:1-2, 9, 11

 “I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need.”

Philippians 4:12

“Why are you in despair, O my soul?
And why have you become disturbed within me?
Hope in God, for I shall again praise Him
For the help of His presence…”

 Psalm 42:5-6

I realise weeks have gone by since last I wrote, leaving everyone in the dark about how surgery went, and what has been going on since. I didn’t even think of it until more than a few people started asking me how I was doing, and it occurred to me my lack of blogging was the reason why! So let’s see what I can remember here…

Our trip down was uneventful, which is always good. We had plans to stay with different friends than usual, and upon hearing that news, Jack promptly decided there was no way he was going to like it. He has only ever known our time there one of two ways: living in our dear friends’ house, or staying with them. Not to worry though! All of that vanished when he walked in the door and discovered this house had a toy tow truck, (among many other amenities to thrill and fascinate a 3 year old)! He had such a good time, in fact, he keeps asking to return. The stay wasn’t only enjoyable for him; Matt and I were very well taken care of, and I couldn’t have asked for a more comfortable or homey respite after my surgery.

We arrived the night before, and I was under strict orders not to eat or drink anything after midnight. I really didn’t think this was going to be as big of a problem as it was, but when I woke up after dreaming about being thirsty, I knew this was going to be an issue. No water, no hard candies, no gum, no anything.  I arrived at the hospital parched and ready to sign in when MUCH to my delight—there stood my dear friend, who had showed up to visit while I waited. I was so excited to see her, that while it would be a stretch to say the time “flew by” as we waited from noon until quarter to four, I was kept pleasantly occupied and free of anxiety by the distraction. She left a few minutes before I was wheeled down to the OR; and gratefully, unlike last time, I had a chance to say goodbye and “I love you” to Matt before they wheeled me away.

When I arrived downstairs the prayers of many kept me at an even keel. The anesthesiologist came by, and when I asked about being put under again, he happily complied. I asked, because of the previous recommendation so strongly not to get it only a few weeks prior, if there were any risks I should be concerned about, but he assured me that with my health condition I had nothing to worry about. My lovely doctor showed up in scrubs, and rubbed my arm as one medical professional after another came by to explain what was going on. She later assured me that everything was going to be fine, but her presence and touch had already dissolved any residual worry within me, and I felt confident as I was wheeled in. This time the anesthetic took less than an instant. We didn’t get past the count of one, as I breathed so deep I was out like a light! I woke up in more pain than I remembered, and my dry mouth? Pretty much glued shut! I was asked how high my pain levels were. Always taking into consideration an unmedicated childbirth, I rated it at an ‘8’. I was given a shot of morphine and asked again moments later. “It keeps jumping from a 5 back up to an 8”; another dose was administered. Again they asked. Still at a 6-7. Another shot. Now? It ranged between a 3-5. “Is it helping at all?” They asked. “It just keeps making me heavier” I answered, feeling like another brick was added to the sack that was me, with each hit. Finally they administered Demerol, my body relaxed, and the pain let go enough to bear.

When they wheeled me back up to Matt he asked me how I was feeling, but between the heavy drugs and my dry mouth, I wasn't able to answer. I finally got some water in me, and they allowed him to bring me some food (thankfully I wasn’t nauseated from the general anesthetic); and both took the edge off of the haze I was in. When I asked later why it hurt so much more this time around, my doctor explained that it was because not only did I have one put in, but they also had to take one out. The combination of removing one, and making a larger incision (so this one could sit slightly further to my right); plus re-routing another tube (with one I swear is larger!) through the same vein in my neck, all contributed to my pain. The new device itself is larger, too, which likely didn't help in the pain department; and, it gives a larger profile than the last one (which was almost non-existent).

As much as it hurt the first day, the subsequent days were not even close to as bad as I felt last time. I took painkillers to manage it, but even still, I was able to regain mobility by the next day, visit a beautiful friend, the doctor for a follow-up, and even get it accessed before we left 3 days later! I have to admit, having someone put pressure around it so soon after getting operated on, and then piercing it with a gripper was more painful than I anticipated it would be.

Tomorrow will be access number 4 with the new port, and almost all tenderness is gone. My amazing nurse here was a pro at handling it when we first returned, despite the change in device. I have a larger scar on my chest now, and the one on my neck is more predominant than before; but they are healing up nicely, it is back to feeling like a part of me, and the convenience of it is unparalleled!

Since recovery, I have had some amazing days—some more productive than I have been in years! I will leave that for the next update though, and hopefully it will motivate me not to take so long to get back to you!

I can’t end this without saying thank-you. The peace I felt; the complication-free operation; the speedy recovery—all of it is an answer to your prayers; and there was not a moment I did not know that without a doubt, so thank-you. Thank-you all.

Blessings and gratitude,

Kate

Just a quick update to let you all know what is going on. 

So after last Tuesday’s fiasco, we contacted our amazing doctor down south, who heard the whole story, and said, much to our relief, that she would book us in. She asked when Matt was off work, and I told her that he was on holidays, but that I hoped, if possible, to wait until Jack's swimming lessons (that started today) were done. She tentatively scheduled me in for the 12^th, and I let out a huge sigh of relief. It was getting done, and I would have time to fully wrap my head around it.

Saturday evening we had to race to the ER because my peripheral IV (as it turned out) had a clot in it; and as a result, was leaking when we tried to flush it, etc. So, out it came, and a new one went in. In my hand (One of the worst places EVER.). It couldn't have been more painful during or after had she tried three times. Not to her discredit-- she was nice, and seemed very knowledgeable. After searching for a whole hour to find a usable vein, and two ineffective pokes later, third time was the charm! She said that I had no more usable veins, and both she and the attending doctor said that I needed to do whatever I could to speed up my port replacement. I emailed our doctor as soon as we got home to notify her of what had happened, and see if I could put in the request.

We got a call this afternoon. "Does Wednesday work?" she asked, on the other side of the line. “Uhhh, this Wednesday?” Yes. It “just so happened” (wink, wink—Thanks God!) that an extra day was created, freeing up a schedule that was packed solid for the next two weeks. "We'll be there!" we said, and immediately I went into panic mode. I wasn't ready for this. I thought I had two weeks to psych myself up for it. We had friends coming for dinner, and we had mountains of laundry to do so we could pack! Not to mention our plans to go back to the ER to get another line placed after toughing it out for two days with a line so painful I eventually couldn't run anything through it! There began the rest of our long, busy day of preparing to leave in the morning.

And here we are! Mostly packed, slightly settled down, with a new IV (that was placed almost painlessly on the first try-- she must have been an angel!), and waiting to leave in the morning. Deep breath. Here we go again!

Thank you so much for all of your prayers over the past while here-- I know they have helped in guiding our journey and carrying us along!

Blessings and prayers,

Kate

AHHHHH! After two weeks up many ups and downs, uncertainties, and rescheduling, today I hit my breaking point.

Last Thursday, after waiting anxiously all day for the confirmation that surgery was scheduled for Monday, we got the news that the surgeon down south wanted me to get an ink test done first to see if there was anything wrong with the structure of the port. The next day, a hospital in the city called to set up the test, to take place on Tuesday the 23^rd. The nurse booking us in said surgery would likely follow the test.

Fast forward to yesterday.  After fasting since midnight (and staying up until almost 3), I was up at 7:30 am, dragging to get myself out the door. My nerves finally set in at bedtime the night before, and followed me the next morning into the hospital. We got in right away, prepped; and before being wheeled down, was told by the head nurse that after the dye test they would most likely be setting up a temporary IV since we “weren’t getting it looked into for no reason, after all.”  When questioned about the temporary part, she admitted she meant a port, as they “don’t stay in there forever.” Temporary or not, it sure didn’t sound like she meant surgery, but rather another peripheral IV…you know, the ones that last a week, max?

Matt was allowed to follow me to the operating room’s doors, which I was parked just outside of in a dark nook that I jokingly referred to as the “storage closet” while we waited; and then I looked up. A box, labelled, ‘Christmas decorations’ was on a shelf above my bed. It didn’t just look like a storage closet! The surgeon came out and explained what was going to happen. My port would be accessed, I would have contrasting ink injected…and not to worry, they would give me pain meds and sedation. “…for the ink test?” I asked, unsure of why that would hurt. “No, for the port insertion” he answered. I told him I wanted to be put under, as I was last time. Sedation doesn’t usually work on me, I said from experience. Apparently he would have needed to know that beforehand in order to book an anesthesiologist, and told me that if it were him, he wouldn’t risk the potential side effects for a procedure like this. I would, and said so; but, wanting to get off of this emotional rollercoaster, I agreed to the grand finale, and said I would go ahead with it, so long as he sedated me as much as possible. He told Matt I would be 15 minutes for the ink test; and an hour if the surgery went through.

Gripper's safety latch removed & set aside; port accessed

We went in and I was prepped “just in case.” He asked if I needed pain meds for this part, too. I declined, thinking it would be the usual port access (and not wanting to look like any more of a baby than I already seemed to!) Then a gripper twice as large as what I am used to was clumsily inserted into my port. Unable to shove it all the way in (due to size, or inexperience? The jury is still out on that one) the gripper cap hung from the end of the needle at a 45 degree angle, dangling, only half-inserted; like a large spoon laying in a mixing bowl. It wouldn’t flush, and it wouldn’t draw blood, which he mentioned anxiously. And then, without holding the port down, the gripper was ripped out hurriedly, my IVAD trying to follow. Another (shorter) gripper was inserted. This time it entered my port, albeit painfully, in full. The doctor, unable to remove the safety latch, worried aloud about the inability to flush or draw from it again, after he struggled to remove the latch off the gripper. I briefly made a suggestion as to how to remove it, but he ignored my idea, stating that the plastic would just crack. Ripping it out, once again without care, he requested a 90⁰ straight needle to use.

Huber needle inserted in port

Well, it took the poor nurses roughly half an hour to scour the entire hospital looking for one. After plenty of foot-tapping, strained small talk, and wondering what was taking so long, the doctor finally had his “old-school” gripper in hand. Because it was one made without a safety lock (with nothing additional to remove), it was much more easily inserted. He was finally able to get it to flush and aspirate this time, and the ink was injected.

The ink showed nothing. The port filled nicely, and flowed along through the catheter tubing without incident. And, even though it still burned when he flushed and filled it, he deemed it structurally sound, and therefore just fine to use—“so long as I use the [new kind of needle] to access it, and forget about using grippers”. He said the grippers and the incorrect insertion of them were likely the problem (ha!) and so long as I switched needles I would be fine to continue using my port. That was easy! Right? I asked him if he would leave the port accessed (so I could use it instead of this pain in the arm!) and strangely, he declined, saying homecare could do it (but not before inserting-- and removing-- another one to do a forgotten heparin flush)!

So, I got wheeled back to the place where I left my belongings, met the new nurse on rounds, and asked her if she could access my port for me. She obliged, using the recently recommended access needle; and accidentally broke it, thinking it had a safety clip to detach, like the other grippers (which would remove the sharp from the centre, leaving a hollow, blunt tube inside). This new needle was just that: a needle, and would stay so, pointed end and all, once accessed.

Beveled needle on a Huber needle

WELL, upon realising this, she said she wouldn’t access it again because she, couldn ‘t just let me leave like that—with a spike in my chest! (“What if something happened, and it came out, and poked you again?!”) So I asked her what I was supposed to do. “Home care,” she answered. Each and every time I need an IV run (up to 3 times a day); with a new needle to poke me each time (what the heck is the point of having a port if you have to get poked every time?!!) I told her that that wasn’t possible—I see homecare once a week for a port access; they won’t come 3 times a day! So I ask if I can talk to the doctor again. The woman was a fortress; a steel wall. No WAY was I seeing that doctor. Because my port was deemed structurally sound, there was nothing they could (read: would) do about it. Now my logic may be skewed, but see if you can follow me: if I can’t use a gripper, because that was the problem (in the doctor’s words); and I can’t use the new access needle, because it won’t suit my medical needs, then the port isn’t in working order at all, since there is no way for me use it. Make sense? I thought so, anyway. She didn’t. Finally, exhausted after going around in circles, the head nurse came back. The doctor passed along that he didn’t say I couldn’t use the grippers, but rather that he couldn’t get them to work. Okay… (even though that was NOT what he said), could they put a gripper in for me then? Oh, NOOOO. No, homecare has to do that (now)!

SO, we drove 45 minutes out-of-town to see our local doctor and nurse. Both of whom still think I need a new port, regardless of what the (“inconclusive”) test shows. So, after getting my port accessed with a gripper (might as well try), and having it burn, slightly swell, and hurt, we are now back to waiting to hear from out doctor down south (who was working until 11 pm tonight!!), so we can schedule a surgery hours away from home (…or not, since, you know, nothing has been certain in this regard); only to recover in a strange bed for days before I am well enough to come home.  Do I want to have another surgery? Of course not! But I do want (actually, need) to be able to access my port, and continue my treatment pain and worry-free.

I sure hope we don’t have to cancel Jack’s swimming lessons for this. 

Blessings,

Kate

“Come to me, all you 

who are weary and burdened, 

and I will give you rest.”

Matthew 11:28

“I am always with You; You hold me by my right hand.

You guide me with Your counsel, and afterward,

You will take me into glory.”

Psalm 73:23-24

We now interrupt your regularly scheduled program to bring you: an unexpected surgery.

Surger—whaaaat? Yes, you heard me right. I have to go in for another surgery. And I’m none too happy about it, either.  How did this come to be, you wonder? Grab a coffee (or a tea) and I’ll explain…

Three days ago, my IV pump started acting up. Beeping with my every movement, and shutting down after every three failed attempts, which it didn’t take long to register. I adjusted my gripper inside of the port, stretched, leaned-- anything to try to get it to move a little, thinking the needle was just jammed against the wall of the port inside, causing resistance. Not so. Nothing worked. I tried compressing the flesh around the port, trying to cause some movement to happen. And that was when problem number two occurred, in the form of a high pitched, “squeak!” No, I did not have a gerbil in my house. By the sounds of it though, I had one in my chest.  We fought  through, and got the pump working in the end. The next morning I woke to the same problem with the IV pump. Only this time, it was beeping every 5-10 seconds, rendering it impossible to take my medication for the next hour. Also, by this time, all I had to do was move my arm and my chest would squeak. Jack found it quite amusing, and requested it on demand. I found it more annoying than anything. Now I was going to have to find a ride a day early to get (what I thought was) a faulty gripper changed, so my medication schedule would not be delayed. 

I made the necessary calls: my sister-in-law would come drive me; the nurse was expecting me; my local doctor was to be paged when I arrived, and the former team of seasoned healthcare professionals was questioned as to how common an occurrence this was (the answer: never.) I was starting to get nervous as the concern with the port itself arose. The old gripper was removed, the new one inserted, and flushed with saline. Pain, burning pain, upon entrance into the port. Blood was drawn, and it barely sputtered out into the vial. I muttered in fear under my breath as the nurse turned to withdrawal via syringe. It worked! Flushing again: saline and heparin this time. My sensibilities (or was it fears?) questioned if it really was burning, and if that really was as big of a problem as it sounded to be. By the time the heparin entered, it was no question: it hurt. The tenderness near my armpit migrated to right above my port.

Where I *wish* it was inserted in the first place!

In an anxiety-induced daze, I followed the nurse to the admitting desk to get the paperwork for an X-Ray and to have a peripheral IV line started in my wrist so I could continue treatment while we were getting this all figured out. My sweet godson kept me from tears as I walked from one place to the next, full of worry over the unknown. The IV line was inserted into my wrist, and as a result I was unable to bend it or move without significant pain. I bounced back and forth between emotional discomfort and  physical on the car ride home, worrying all the way. Splinting my wrist once we got home helped a bit, as it kept me from bending it when it needed to remain straight. Jack became my doctor as he took over, commanding me to put my arm here and not there; and petting the fingers peeking out of the gauze; sing-songing a soothing, "shhhhhh, it's o-kay. It's o-kay"-- after checking to see if my chest could still squeak (it couldn't).

A Port being punctured by a Gripper

This afternoon I received a call from my primary caregiver down south.  What it comes down to is while this port was supposed to last me the length of my treatment, it doesn’t seem to be doing so. Many things could be the cause, including the possibility of a tear in the membrane where the gripper needle enters, causing it to leak under my skin instead of into the catheter tubing that leads to my heart. There are tests that can be done, but it can be difficult to tell if I need a new one or not. For a multitude of reasons  she has decided that regardless, the new port is the safest way to go. There is a new, and better port system available that has  no need for constant and expensive heparin flushes, is made with a non-metal material that can withstand a myriad of tests, such as CT scans if the need presented itself, and has catheter tubing placement in such a way that there is little to no danger of a kink (which is another possible cause of my troubles). And while it sounds great, it's the getting there that has me less than excited.

I am scared. Nervous to go through the healing again, about what my new scar will look like, the learning curve of how to access it weekly, and so on. And while I am grateful it conveniently falls on Matt’s hard earned time-off so he can be there with me, I am disappointed that this is how we will be spending his “vacation”. I am frustrated that after feeling so many improvements, I have something major to deal with again, reminding me of just how sick I am.

Remembering the time span peripheral IV’s tended to have in the past, and not wanting to get stuck over the weekend without one, we went back to have one reinserted today in a less painful, convenient location; and with longer tubing, so I can do the job with both hands, maintaining the same level of independence as before.  I will continue to use it, and replace it as needed, until the Monday after next, when my doctor hopes to have a surgery scheduled for.

Look at all of that scar free skin to poke into!

So, in typical nature of this disease, the difficult parts come hard and fast, while the good comes slow and steady. This too will be good in the end. We will have a "fresh slate" to work with-- less scarring to contend with on a weekly basis when accessing the port. The dime-sized entrance has been poked over 60 times already (giving no new skin to go through), and it hurts much more to push a needle through scar tissue! 

What it really comes down to though, is if this is what is safest for my health, then this is what we will have to do.

Please pray for me. I need all the courage, peace, and strength I can get right now!

Blessings,

Kate

“As for you, you meant to harm me, 

but God intended it for a good purpose, 

so he could preserve the lives of many people, 

as you can see this day.”

Genesis 50:20

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