Home again, home again!

This trip was particularly trying after not having been on IV fluids for the past 2 weeks. As I mentioned before, I am on 2-3 liters of fluids a day intravenously; without them, my blood gets thick, my pain worse, and in this case—seizure activity starts up again. The ride down took a lot out of me, but fortunately I had a full day in bed to recover before our doctor’s appointment on Friday.

As it were, my blood tests came back clear, vitals better than ever, and the only concern (other than my port) was my thickening blood. Blood tests ruled out infection; the previous x-ray ruled out any kinks in my catheter, or the possibility of it disconnecting from the port hub; and given there was no heat or swelling over the area, we didn’t have much to go off of other than some significant pain. By powers of deduction, the next step is to see if it isn’t the fascia (tissue between the skin and the muscle) that is irritated. So, after a much needed check-up, we were sent back home to get some light massage of the fascia via cranial sacral treatments. If that doesn’t move things back to where they belong, and the pain is still present, we head back for surgery.

I have to admit, at first I was feeling pretty indifferent towards getting a new port in. Go ahead, just knock me out and slap another one in there! But as time has gone by, and the reality approaches, I have that sinking feeling in the pit of my stomach again. It is all rather vain, really, but my last surgery left me with a very noticeable scar; which, when covered by a gripper and dressing, isn’t very easy to see. The thing is, this time, if I need surgery, they can’t put it in the same place. If it is the tissue that is the problem (and not the port itself), then getting a new one placed there will do me no good. I will likely have to move to the other side of my chest. Now don’t get me wrong, I am all about symmetry, but in this case, I could really stand to do without. Not to mention how much worse my existing scar is bound to get when they go back in there, be it next week, or a year from now.

In the meantime, I was slowly regressing without my fluids, having not been able to access my port in some time. So until we get this figured out, it is peripheral IV’s in my arms again (they seem to last about 3 days in my weak veins before blowing out and/or needing a new one). I was able to get a really good nurse today who found a good deep vein in my forearm; which means less pain, more mobility, and a chance of lasting longer vs. placing one in the back of my hand or the crook of my wrist. And, she did a really good job of putting it in there. As far as peripheral IV experiences go, it was a good one. I have been slowly dripping fluids sans pump ever since (a pump goes too fast and makes it hurt…hopefully this will help it last longer, too, if I go easy on it).

I said to Matt on the way to the hospital today that it really was unbelievable how terrible I felt. It was a huge wake-up call for me—that I used to feel that badly on a regular basis, and how unbearable it felt in the moment. I am so grateful for how far I have come, and for The One who has carried me here.

Spirochetes: the corkscrew-shaped bacteria that is Lyme

I am still on a hiatus from IV antibiotics until this is all sorted out, which I am also sure is playing a part in how awful I have been feeling. The break has been okay, but it is about time we get back at them, and soon. Strategically, I think we are in a good place. The Lyme bacteria have likely unsuspectingly come out of hiding somewhat, without the presence of antibiotics, and when we do hit them with a new one, they will be hit hard!!! A few weeks ago I wrote about how scared I was for the Herx to hit when that time came; now, I just feel competitive, and ready to kill.

Thank you all for your prayers over this past week. I have been slowly trying to recover from our trip, and am hoping to faster now that I am getting a decent amount of fluid in me! Please pray that this would all be resolved soon; that God would give me the trust in Him, and the courage I need; and that I wouldn’t let fear or vanity dictate what is best for me or my health. Also, if an escape from surgery is possible, that there would be one.

Love and prayers back at you all,

Kate

“In the world you will have trouble, but take courage, I have conquered the world.”

John 16:33

Prayer request please!

I am heading off to see our doctor down South early tomorrow morning, as I have been experiencing troubles with my port as of late. The catheter attached to my port has been causing me pain for weeks now (normally I can't feel it at all). We tried the ER closer to home (since it would be nice to avoid the 6 hour drive!) but it didn’t provide the answers needed. Last week I had to remove my gripper the pain was so bad, and have been without my IV fluids for over a week now. I am dehydrated as a result, which causes great pain in addition to my chest and neck pain. Please pray that they can isolate the cause of the pain, and find some sort of remedy.

I also want to thank you all for the prayers; the anonymous and the thoughtful “pick-me-ups”; and encouraging words after my last post. Mentally I am feeling worlds better, and I know I owe it to your care and concern, and many answered prayers.

Blessings and love,

Kate

Jesus replied, "You do not realize now what I am doing, but later you will understand."   ~John 13:7

I don’t know how I got here. It could be the grueling 2 month marathon I had trying not to throw up everything I ate. It could be those pesky female hormones. It could be a Herx reaction. It could be nature’s course of not feeling hunky-dory all the time. Whatever it is, I am here. Call it what you will, as it changes throughout the day: at the bottom of a pit; drowning; falling apart; standing below a mirror as it falls upon me and shatters into a million little pieces without making a sound, yet rocking me to my very core; suffocating. I feel so depressed I can’t make sense of the good that was and is yet to come, and I hate it.

I hate that I am sick. I hate that my husband has to take care of me, waiting on my every need. I hate what this has stolen from our marriage, our social life, and our dreams for what a life together would be like.  I hate that I can’t take care of my son; be part of his school life; do much anything at all for his physical being. Even helping him put on his pajamas is a struggle at times. I won’t even get started on the mental tug-of-war that revolves around family size and the future ability to have babies.

This pressure; this pressure all around me; from myself; from others—“any idea when you will be better?” Don’t I wish! It has been almost 5 years since that damn tick bit me. Almost 5 years of not feeling normal; not having the strength I used to; to being able to live out who I am in action.

I know there are others far worse off than I. I know I have multitudes of blessings around me. But right now all I can think of is what has been taken from me, what I can’t—despite all my efforts—regain from my place in bed. The light at the end of the tunnel has faded to a pinprick and I don’t know why.

I am not angry at God in all of this. I am just waiting. Not so patiently at the moment; wanting to know when, and if it be His will, why? But most of all I want Him to kick Satan in the teeth for wreaking such havoc on my mind and stealing my hope. Because I am sure there is reason for it to be there, I just can’t see it now.

“Let my cry come before you, O Lord;
    give me understanding according to your word.
Let my supplication come before you;
    deliver me according to your promise.
 My lips will pour forth praise,
    because you teach me your statutes.
 My tongue will sing of your promise,
    for all your commandments are right.
 Let your hand be ready to help me,
    for I have chosen your precepts.
I long for your salvation, O Lord,
    and your law is my delight.
 Let me live that I may praise you,
    and let your ordinances help me.
 I have gone astray like a lost sheep; seek out your servant,
    for I do not forget your commandments.”

Psalm 119:169-176

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