I have basically been waiting on news of when my surgery would be rescheduled to post anything new. Between our doctor going on vacation, waiting for me to heal, and finding a date that works with Matt’s schedule, we have finally arrived at a time slot! In just a few short days—this Monday, May 12^th to be exact, I will be getting my replacement Hickman put in.  

There was a time in all of this waiting when I began to hope for a PICC line instead—and in fact, would still prefer one—but it is trained nurses that insert them now, not surgeons; and once they heard that I had four previous lines fail, they refused to take me on. My hopes dashed; I am left standing on this slow escalator, moving toward one of the very things that repulses me the most—unable to get off.  It is a double-edged sword, this catheter: one that I so desperately wish I could get out of needing; and yet, something I can’t wait to have over and done with, so my treatment can get back on track, and I can start making progress again.

This past month of five without IV antibiotics I have deteriorated even further than the last. My memory is getting so bad it scares me sometimes; my pain has kept me from having visitors almost exclusively since Christmas; and things that I was just starting to get used to being able to do I have had to give up once again. I am ready to start fighting back against this disease that has reminded me, almost full-force, what it has taken from me.

The birthday boy and his new scooter!

On the bright side, I did manage to get a temporary IV placed and running for over a week (they usually only last three days) starting just before Easter. It made a huge difference in what I was able to do physically, even though the anxiety and insomnia remained prevalent. I was able to celebrate Easter with my family: attend church, bake buns, and share dinner at my parents’ house. It was a long, but wonderful, day! The weekend that followed was Jack’s 4^th birthday, which I had started planning months ago (something I have to do in order to get everything done!) We decided on a house party for this year expecting that I would feel well enough to execute it.  I did not, and It was overwhelming, to say the least. We were so much wiser last year in renting a place!

 There were things that, even last fall, I would have been able to manage; but had to let go of one plan after another as I (once again) came to terms with the fact that my capabilities were not what they used to be; Lenten and Easter activities with Jack; birthday party details; play dates, and the like. My list rapidly became shorter, and priorities clearer. I was brought back to a time in my illness where I had to say no to so much more than I had grown used to in my recovering health; only now, I am not so used to it, and the coping mechanisms had since shut down, failing to serve me when I need them to most. Acceptance is harder to come by these days; and if I am honest, many days when I feel the worst of it, so is hope.  Luckily I had an amazing team of helpers to pull it all off, and I was able to be there for Jack’s classroom “party” (at school), as well as move and mingle and celebrate Jack’s big day with him. And, it was all worth it; for at the end, he told me it was his, “best birthday EVER!!!”

He even scored his first goal!

This week, despite how I felt, I managed to force myself outside.  There are times when mental health outweighs the physical, and many of these situations were just that; the others were born of necessity; and a few came from just plain stubbornness that I am as sick as I feel.  The first: Jack’s measles booster that I couldn’t find someone to take us to; and the subsequent trip for ice cream as a reward for such bravery (and he was— SO brave!) I drove us where we needed to go: not far, but the farthest I have driven yet! That evening, I had the assistance and support of my dad as we attended Jack’s first soccer game. I could have stayed home, too tired, but I refused to miss such a milestone. And while I pushed through my physical strains, I am very lucky they didn’t backfire on me completely! It was a gorgeous evening, and I am so grateful I was able to go.

Two more milestones: yesterday, I drove again, taking Jack along solo (no nanny or relative this time!) as I introduced Jack to Matt’s and my love for garage sale-ing.  I think I have him hooked! The second major feat in our excursion: grocery shopping by myself for the first time in years; and not just without assistance, but with Jack in tow! I relished every “normal” moment, from choosing produce together, down to him throwing marshmallows into the cart (against my wishes)! There were even a few other errands in between (mailbox, drugstore, a clothing return); and came home exhausted and elated with all of the quality time I got to spend with my son. It was the best Mother’s Day gift I ever could have asked for!     

                                

To all of you mothers, grandmothers, and godmothers, to those of you who are missing their mothers, and those of you who are a mother to many by heart but not by name: I wish you a very special day tomorrow!

As for us, we will be having our celebration in the morning before we start the drive down!

Blessings and love,

Kate 

“We must accept finite disappointment, but we must never lose infinite hope.” ~ Martin Luther King, Jr.

“I am with you and will watch over you wherever you go, and I will bring you back to this land.

 I will not leave you until I have done what I have promised you.”

Genesis 28:15

Surgery and Post-Op

Oh my goodness! Where to start? It hasn’t been long since I posted last, yet so much has filled the days, I am left without an accurate perception of time. Some days have gone on like weeks on end, leaving the next full of disbelief that, “that was only yesterday?”  So, in a sense, it has been far too long, and I will do my best to fill you all in.

We had a relatively pleasant drive down to see our doctor; dry roads; spring weather; and the beauty of Southern Alberta as our view. This time, for a variety of reasons, Jack stayed in Edmonton with his grandparents. It was hard on my heart to be away from him for so long, but worked out really well for both Matt and me; as we orchestrated trips to the hospital and doctor, in between my needing to rest and recuperate at the hotel, with greater ease.

Surgery this time hit me harder than last. I was scheduled to go in for 1 o’clock, and planned to sleep every moment I could up until we had to leave. However, around 9:30/10 a.m. we got a phone call asking us if we could be there right away, as they had a cancellation (which we later found out was due to the previously scheduled patient having a Coke for breakfast!) So, we scrambled to get ready and to the hospital for 10:30. My dear friend, who visited me last time as I waited, made plans this time to do the same. It would help keep my mind off of things, and be a good time to visit before I was down and out from surgery. Even though she could come early as well it didn’t quite work out the same this time! We basically got there, signed in, got changed; interviewed; and I just had time to take off my toe nail polish (thanks to my friend bringing me remover and supplies—I had completely forgotten!) before getting whisked away. Each nurse I encountered said, “isn’t it great you could come early so you didn’t have to wait all day?!” As I thought to myself, “Um, I was going to be sleeping, not waiting...” But, I suppose I ended up sleeping anyway!

I spoke with the main surgeon who asked where I wanted the new scar to be, and was able to ask him to try to reduce the scarring that was already there. We later found out, after him questioning, that my scar looked so bad because one of the meds that I was on contained steroids, which can cause an overgrowth of scar tissue. So, while he said he would do his best to minimize it, he left the “healing it well up to [me].” 

The anesthesiologist was one I hadn’t met before, and basically gave me two options: get local freezing and some sedation; which would keep me awake but “unaware” (yeah, it doesn’t work like that for me. I have had it done for other procedures before and I was more than “aware,” thanks); or, I could be “put under.” “Put me under” I said, knowing that I did well with it the last two times, and that I couldn’t mentally handle being awake for this surgery. Well, I’m not sure what the third option was (or fourth, or fifth, or how many others there may have been), but while this one started the same as the other two (an IV and deep breathing of a tingly gas); it ended with me waking up to a sore throat because I had been intubated! Not something that I thought was part of the plan. It paled, however, in comparison to the pain in my neck and chest.  They must have read my chart, since last time it was Morphine, Morphine, Morphine, Demerol before I got relief; and started this time instead with Demerol, Demerol, Demerol—Morphine, Morphine, Morphine—NOTHING IS HELPING! Each dose only served to make me loopier, and barely touched the pain. I was drugged sky-high and in so much pain it wasn’t funny. So they brought out another derivative of morphine (dihydromorphine?) and topped me up with that, hooking me up to an oxygen tank at the same time, as the narcotics were affecting my oxygen levels. They wheeled me back after some time, and I got to eat (I thankfully don’t get nauseated from anesthetic, which is a huge bonus since they make you fast for so long beforehand), and sent me “home” to our hotel.

Double-lumen ending

The next two days went rougher than last time; I didn’t bounce back as quickly, and as a result, had to cancel plans to visit while we were there. I slept, took pain killers, ate, zoned out in front of a bad movie, and slept some more.   We had an appointment to see our doctor and have the site assessed (most especially because they couldn’t get it to stop bleeding the day before). I asked questions such as why there was only one lumen (tube on the end) instead of the two we talked about, and wondered aloud why there was no butterfly clasp sutured to my chest to keep the catheter in place. The answers: only one lumen is necessary unless one is on dialysis, and that there was a “cuff”—a thicker piece of polyester tubing—under the skin that my body would heal to; keeping germs out, and the catheter in place. I just had to be careful with the tubing until it healed. Even after healing, it had to be handled more delicately than a gripper tubing once did—which meant no more using a spaghetti strap to wrap it around and out of the way.  Our doctor carefully changed the dressing, was satisfied with how good the site looked, and that was that! After discussing a reduction in the medication that contains steroids (which I was on to pump up my adrenals and give me more energy, something I don't lack as badly as before) we decided to slowly wean off until I felt I needed them, or I was off of them completely! The next morning we packed up; stopped for lunch date; and  headed home to the child, and the bed, that I missed so much.

First pair of glasses EVER! So handsome

Because I was starting to feel a little bit better, I came down with a head cold (Murphy's law strikes again!) It wasn’t until Friday that I made it out of bed, and out of the house, for a quick trip to the mall to get Jack’s new glasses fitted. I didn’t need to be there, but felt that this was a "mommy moment" I couldn’t miss. I faded fast, and we left the mall shortly after his glasses were ready. I knew I felt run down, but besides walking, I hadn’t done anything strenuous. When we got home, the ritual of stringent hand washing and immediately changing our clothes took effect; only, when my shirt came off, I noticed my catheter tubing was way longer than before. Upon closer inspection, I was sure I could see what they called the “cuff,” laying against my tanktop—not only outside of my body, but outside of the sterile dressing! I called Matt into the room immediately—my level headed, down-playing husband, and showed him. “Oh BOY!” was his response. I knew it was bad.

Close up of the cuff 

We are so fortunate to have our doctor’s cell phone number, because at 9:30pm on a Friday night, we were able to call her an inform her of our emergency. She paused several times, indicating the seriousness she felt towards the matter, as she asked us measured questions. How far out was it? Was it still under the dressing? If so, could we just push it back in? “Three inches, no, and definitely not!” were my answers. Every time I looked down at it, I felt sick. Even if it was still under the dressing, I couldn’t have been the one to thread it back in unless it was only on the verge of coming out. My mind was racing. How could this have happened? I carried a light purse—on the other side of my body; I made no sudden movements (it would have hurt too much). I was careful not to lift Jack, even when I was sitting down. What was going on? (And a little bit of, You’ve GOT to be kidding me! Thrown in for good measure.) I was so exhausted from going to the mall while still recovering from surgery, and nursing this head cold, that there was no way I could handle the ER that night; so I was very grateful when she told us to “cover it with a [clear] dressing and go first thing in the morning.”  Which is exactly what we did.

The next morning, we dropped off Jack at my brother and sister-in-law’s house to “play with [his] cousin,” and headed to the ER.  Still exhausted, but grateful for the sleep I did get, we began our plight into the medical system. Thankfully, we didn’t have to wait long to get a bed (around an hour or so?), and a cheery nurse came in and asked what the problem was. I showed her my line, explained I had it because of Lyme Disease, and on we went.  Routine blood was drawn; and after some time, the doctor came in.

The “usual” interview was conducted. Where did I “think” I got Lyme, how long have I had it, when did I get diagnosed, what medications am I on, etc, etc? He had already pulled a list of my medications off of NetCare (online system that all doctors can tap into and see your Albertan medical files), but when I told him I was taking heparin, he seemed surprised. “What for?” he asked. “For coagulation problems,” I answered. “From what?” he inquired, and began to list off several different diseases. “From Lyme,” I told him, going on to explain that it makes one’s blood thick. “Oh, I didn’t know...” he began, trailing off as he thought the better of expressing his lack of knowledge.  And away he went.

Back came the nurse, after a group of them had crowded around the doctor, pouring over my history on the computer. This time, she had a Lyme testing kit in her hand. “Okay, dear, I’m just going to poke you one more time...” she said, chipper and sweet. “For what?” I asked. “For Lyme” she answered. “Oh, no thank you, I already have Lyme! No need for that,” I smiled, resolved in my position. Somewhat flustered, away she went.

Enter nurse #2:  Lyme kit in hand. “Just so you understand, the doctor,” (who was no more than 10 feet away on the other side of the curtain) “wants you to have the test done, because according to your file, your test for Lyme came back negative in 2011.” Sigh. “I know,” I explained, “I was tested with the C6 ELISA test, which is only slightly more accurate than the standard ELISA test—which provides a 50% false negative—because it tests for three of the 100 North American strains of Lyme, vs. the one that the ELISA test does. However, because I got bit outside of North America, the test will not come up positive for one of the 300 strains worldwide that I have caught. So I don’t need to take the test again, because I know it will come back negative.”  And away she went.

Time passes. Enter doctor once again. He also mentions the test and why he wants it done. I reiterate what I told the nurse, and explained that was why I went to the States for treatment.  “Oh where?” he said, sarcastically, “California?”  (Apparently there has been a e-mail recently circulating to doctors across Alberta—if not Canada—stating that Lyme treatment is only necessary and worthwhile for a maximum of 2 months, and that certain California laboratory testing measures are providing false positives.) “No,” I replied, “our specialist was in Kansas; and she sent for testing all over the US and Germany.” Now that he had nothing to say to that, he moved on to scare tactics. He told me how dangerous it was to have this kind of surgery done in the first place, and that I am only 28, and too young to die! He mentioned previously in the day that he had never seen a Hickman line before, but now went on to say he watched a girl bleed out on the operating table during the insertion of one of these, and nothing could be done to save her. Sure, it was a small chance—but still not one he thought I should be taking (you know, with a negative test, and all).  

After a consult with a resident surgeon (who was afraid of me  contracting sepsis from trying to save the line); an x-ray to detect  where the catheter lay inside; a blood test to see if the line was in a vein or in an artery; and “securing” the tube with “latex-free” tape (I asked); the emerg doctor decided it was best to pull it out.  He would have “sent me back” to where I got it put in, but he was, “afraid the catheter would nick the vein on the drive there and [I] would die in transit,” so, he was willing to do me the favour.  At this point, I had been assigned the male nurse; the catheter manual was read; the LATEX tape was removed (leaving welts that lasted well into the next morning); and Matt watched as what was supposed to be “slow, even pressure” during removal turn into the doctor pulling my line out like he was starting a lawnmower. For 10 minutes after (this was NOT in the manual), he had the male nurse put all his weight behind his hands, and on top of my fresh wounds on my neck and chest—for 10, full, timed minutes (you know, so I wouldn’t die of internal bleeding). It was excruciating and completely pointless for him to be laying into my fresh port scar, as it had nothing to do with the pathway of the line, or the exit wound he was supposed to be putting pressure on an inch above it.

The ripcord: i.e. my old Hickman line

Now, before thinks I am not taking this seriously (as the emerg doctor believed), I do; and I am always grateful when one errs on the side of caution. But when our 3 hour wait “to make sure there aren’t any complications” turned into a 5 hour one simply because they didn’t want to let me leave 10 minutes early (and would be busy for the next two), my frustration mounted. Nevermind the fact that they didn't check on me or my vitals once, which is why we were there! Through the prayers of everyone out there, and my own, I managed to stay firm, and mostly pleasant throughout—at times much to my own surprise! In all of the discomfort and anxiety, God was there. 

An hour into being "monitored;" exhausted

When we finally got home at the end of a very long day, we emailed our doctor down South. She said she will have to discuss it with the head surgeon on Monday (yesterday), but it isn’t likely he will want to do another vascular surgery on me, when two have failed in such a short amount of time; so we may be looking at a PICC line after all. And while I strongly dislike PICC lines, I do like the lesser amount of pain, scarring, and recovery that come with them. Only time will tell. Until then, my veins aren’t good enough for peripheral lines anymore (to my knowledge), so I will be in dehydration pain from lack of IV fluids until we get this figured out.  So now: we pray, we wait, and we pray some more.

Remember this guy?

If you would join your prayers with mine, I would greatly appreciate it.

Blessings and love,

Kate

One day, it will be me saying this:

 But for now,

Style, Swimming, and Surgery

Once again it feels as though it has been too long since I last touched base. A lot has happened since I posted last; good and bad. In case you haven't noticed, my blog has undergone a major revamp. (I will let you decide if that is good or bad!) As for the rest of things, I will start with the good:

After weeks of leaving my port un-accessed (no gripper needle in it); going for gentle massage; and not having IV fluids pumping through it, the pain on the right side of my chest decreased slightly. Since it wasn’t accessed, I was able to partake in Matthew’s birthday festivities, at The West Edmonton Mall Waterpark! For those of you who don’t know, my husband and son go swimming together at the local pool, often  more than once a week. I had only recently been given the go-ahead to join them (my immune system and body were just too weak before). It was a family activity we could finally all do together— and I was so excited! It was so much fun, and I not only got to play with my godsons and nieces in the kiddie pool, but I even got to go on a few slides! The worst part was the number of stairs I had to climb to get to each one (and boy did I ever feel it the next day!) but words can’t express how grateful I was that I got to go. It wasn’t as carefree an experience as I imagined, with all of the pain I was in, but none of that mattered when I got to see my son put his head underwater for the first time as he "swam"! 

It came time to try to access my port again, and not only was it super painful having the needle go through (it usually isn’t very bad), having fluid flushed into it hurt as well (usually don’t even feel it). We came home to attempt using it at a lower infusion rate (pumping slower than usual), but quickly noticed the pain was back, much to our disappointment.

All of this time I have been praying, worrying, and asking for the intercession of others so that I might avoid surgery and the additional pending scar I was sure would come with it. There are lots of positive ways to look at scars, and granted, they could definitely be bigger than this, but none of that mattered to me at the time. In what sounds like good news, my prayers to keep the scarring to one side of my chest were answered.  I say, “sounds like,” because to me, it is not.

You see, my prayers not to need a new port were answered; however, a surgery is still required. Apparently, a port is not the best device for my medical needs. The amount of times I get it accessed (read: poked); combined with the fact that I have it pretty much permanently accessed (but for a few hours on the day of a dressing change); not to mention the quantity and frequency of fluids I am pumping through it; is all way more than what the device was created to handle. Did they not know how often I would need it accessed before putting not one, but TWO in?! Don’t worry, I asked. As for an answer, it wasn’t a clear one. Basically, the ideal use for a port would be, for example, chemo. It would get accessed approximately once a month, used once a day for about a week, and then removed for the remaining 3 until the next round starts again*; and it isn’t needed for months and months on end. (*Note: please forgive any ignorance of the ins-and-outs of chemotherapy on my part, and any false impressions I may have given about it.)

If a PICC line was an option again (on their side of things, not mine—I detest the things!), it was not mentioned.  I was worried that it would be brought up again, and was ready with my laundry list of why I dislike them so strongly. Little did I know that list would come in handy anyway. You see, they don’t want me to get a PICC line again: they want me to get a Hickman catheter. I thought the emotion I previously held for PICC lines was hate. The Hickman has had me redefining my feelings. A PICC line? A PICC line I despise. A Hickman? A Hickman I HATE.

The Anatomy of a Hickman Catheter 

What is a Hickman? A Hickman is similar to a PICC line, in that it is a free-flowing tube from the inside of a vein, to the outside of one’s body. Only this time, instead of my bicep, it will be in my chest. Vanity? Ha! Vanity... I thought parallel scars would be bad, but this?! The thought of this— of me looking like this—it makes me want to throw up. For some of the few that I have spoken to about this, I am sure it has been difficult to understand why I feel so strongly against it. A port isn’t exactly the epitome of beauty either—far from it. But it is concealed; what is inside stays inside, and what is outside is purely medical device. With a Hickman, there is, although small, a permanently open wound. Nothing to keep me separated from the vulgarity of what exists; nothing to keep me from feeling somewhat “normal,” at least on occasion. 

Warning: photograph of a Hickman below

The news came in the form of an e-mail. It was unexpected, and to-the-point. For the first three days after reading the change of plans, I was engulfed in depression; a fog that permeated my being, and left me unable to think of, or see, anything else. Was there no other choice? Surely this couldn’t be the only option! I slept, researched, cried, and slept some more. Finally, I was granted a phone call with my doctor. If nothing else, I could gain a better understanding; prepare myself. And so it went, that there was no alternative; and what I am sure she thought to be the (small) consolations of, “it [being] a less invasive surgery” with the following option of, “[covering] the wound with clothing” to hide all that I find distasteful (from everyone, that is, but me). All I had read about it limiting me by putting restrictions on the amount of weight I could lift, and on some of the activities I would do as I continue to gain health, were apparently false. The one truth in what I read was somewhat obvious to me: my newly acquired freedom to swim (when my gripper is removed) was being snatched back; leaving me devastated.

While having a Hickman line inserted is less invasive than having a port insertion done, I will be getting my port removed at the same time, so we aren’t quite sure what to expect in terms of recovery. The new catheter will follow the same path as each of my port catheters did, so I am not sure if that works in my favor or not (in terms of pain and healing). I am hoping that they will be able to reduce my current scar from my port(s) when they take it out for good this time. I’m no surgeon, but I have seen some fantastic plastic surgery on TV, and while my doctors aren’t trained professionals in that field, I am fairly confident that they have some type of scar reduction techniques up their sleeves.  Though to be honest, that is the least of my worries. As long as I am getting better, this scar is a battle wound; and a positive one at that.

The date is set for Monday, March 17^th. At least with my heritage, I will have a little Irish luck on my side ;) I have been trying to pack in as much as possible before the big day; and despite an extremely painful chest from a slipped rib on one side, and port issues on the other— I had a few very successful days! Of course, now I am recovering from them with a lovely ol’ Herx reaction, but each moment was worth it. I even got a little driving in— for the first time since October!

I am slowly coming to accept that this is happening (being okay with it is a whole new ball game!) So if you could all continue to keep me in your prayers, they are what keep me going. You can be assured of my prayers as well; and as always, requests are welcome!

Blessings and love,

Kate

“When we shall see Him in Heaven, then we shall understand the price of suffering and trial. Like Jesus we shall say ‘it was truly necessary for suffering to try us, and bring us to glory.”

–St. Thérèse of Lisieux

“Hear my prayer, O Lord;
    give ear to my supplications in your faithfulness;
    answer me in your righteousness...
For the enemy has pursued me,
    crushing my life to the ground,
    making me sit in darkness like those long dead.
 Therefore my spirit faints within me;
       my heart within me is appalled.

I remember the days of old,
    I think about all your deeds,
    I meditate on the works of your hands.
 I stretch out my hands to you;
    my soul thirsts for you like a parched land.”

Psalm 143: 1, 3-6

To the mom in bed, who no one sees

I have been reading many beautiful articles aimed at mothers, working and stay-at-home alike, giving the much-needed encouragement these women need. I find them kind, inspiring, and hopeful; but not for the same reasons most other parents do. In fact, most often, I want to send them to my husband, exchanging the synonyms for “mother” with everything he is as a father; because these articles talk of stained clothes and skinned knees; countless PB&J sandwiches, and trips to the park; they speak of tending to all of the things I hope to one day do. And they make me think: there has to be more to motherhood than the tasks I can’t do. So, in honor of mothers who have to do things a little differently, here is my post on the subject:

To the mom in bed, who no one sees,

Before this, you had no idea how badly you’d wish you could change a poopy diaper. No one would believe you when you said the thought of changing urine-soaked sheets in the middle of the night (or any time at all) would be a desire you held in your heart. That the mindless tasks that nobody hopes for, but almost every mother performs, seem like the greatest gift you could receive. To make the dinner that gets refused; to bundle your child up for fifteen minutes only to hear, “I have to pee!” To the grocery store runs with a toddler that were timed too close to a meal or a nap that leave the whole store trembling in your wake. You dream of these days that will give you the badge of motherhood. But instead, you wait.

You wait, and you ache; you worry over whether your child will know they are loved enough, or thought of enough, or important enough to you; simply because you cannot do these things. You sit on the floor to hold your crying baby, crying yourself because you are too weak to stand, and all that baby really wants is a mama who will hold him and walk. You give assured kisses as your child tucks you in for bed, promising you love them and will see them soon. You deny playtime and beg wearily for a quiet cuddle instead; but that rambunctious 1 year old doesn't know what it means to sit still (or why you can’t chase him).

You delegate. You try to know her favorite food or his schedule, but sometimes you fail; because life is ever changing, and you aren't always there to see it. You teach others how you want your child raised: from time-outs, to picky eating, to how much screen time is allowed in a day; you stress the importance of not telling a child they are bad, but that their behavior is bad. You research to make sure that there isn't a “better way” of doing things, and pass along all the wisdom you have gleaned.

You push yourself harder than you should—past what your body or your sanity can handle—just to have a “normal” experience with your child once in awhile. You adapt. You learn what you can do with your child, and you give it your all. You read to him; you read, and you read, and you read. You break your own rules about screen time just so you can keep him still so as to be together a little while longer. You share snuggles when you can; make shadow puppets; tell stories about your childhood or how you met Daddy. You teach him about God, and The Greatest Love Story Ever Told. You pray together. You have picnics in bed. You tickle and you laugh and you love. 

You do your best to help them understand something that should never have hit this close to home; and explain the wonders and dangers of the medical world around them. You let them play doctor on you, and feel a strange mix of pride and sadness when the squeamishness you felt as a child isn’t present in them—but  just the opposite—as this world of medicine is the norm for him now, too. You thank God this happened to you, and not them.  

You discipline. You get very creative at disciplining a child that you can’t chase after. You teach; you inform; you correct; you forgive. You teach what it means to show compassion, and how to do so regardless of your circumstances.

You ache for all you cannot do: volunteer in the classroom, enjoy the summer outdoors, or even give your child a bath. You watch as someone else does it for you, and feel gratitude, jealousy, sadness; and, sometimes joy. You experience the bittersweet feeling of knowing your child loves their caregiver, happy that a positive bond is formed; and, sad that it isn’t with you.  

Dear mother that thinks no one sees:  I do. I see how the world so often defines motherhood as caring for your child’s physical wellbeing, and I challenge it with you. I know the struggle with self-worth, and the direct correlation you make between how much you can do, and how valued you are. I know you worry that their childhood will slip away without you ever being a "real" part of it. I know how much you love your child, and how that love is no less than the mothers who are physically able to do laundry or unload the dishwasher. More importantly: your child sees you. They feel your love and know it is there. In the midst of your doubts and your worries, they know. Even when you aren’t the one to share in that childhood favourite, or hold their hand on the way to school, they know. You are irreplaceable.  For as long as you are loving them, you are their mother. And there is no doubt in my mind, by that definition, you are a not only a mother—but a good mother, too.

Love,

Kate

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