Posted in PICC line

Droplets

It’s surprising how just the smell of alcohol swabs, the taste of saline in my mouth, is enough to make me scared. Not scared of the actual infusion of a 1/4 dose of minocycline. What makes me feel ill before the medication actually is even hooked up to me is the knowledge that in hours, or days I am going to be feeling terrible. Or if this tiny dose doesn’t do much to make me herx (ie: all my symptoms will get infinitely worse because of the toxins released from the bacteria dying in my body), when we increase it to 1/2 a dose, and work our way over a few weeks, or a month to a full dose…well, then I will start to feel lousy.

It is really, really easy to get used to not doing IV meds. Because when you are on them, you feel terrible and ill all the time, and when you go off them, you do go downhill a little, but gradually. It’s nothing like this burning pain that started up in my chest 5 minutes ago. And we’ve only dripped in about 1/8 of the 1/4 dose I will be doing tonight.

I only was infusing for less than a minute before I could feel the cold hands of the drug sizzle out through the end of my peripherally-inserted-central-catheter into my heart. The best way I can describe it is it feel like heartburn, but literally in your heart. It feels like butterflies flapping around the cage of your abdomen, but instead in your rib cage. It is a cold feeling that seeps over you, kind of like what I imagine it feels like when those humans in the ‘Invasion of the Body Snatchers’ get taken over. This feel creeps over you and then suddenly it’s all around you, all in your lungs and your head and your heart and you feel like you can’t get enough air. It makes me want to cough until I can clear my lungs, but that won’t happen. You can’t get out what you’ve put into your veins. Only your organs can filter it out as best they can.

On the bright side, I only have to infuse ever 3 days or something like that. So basically when infusing, it feels scary and painful, and after that I just have to wait for my worst symptoms to peak. Easy peasy. Beats an IV every day!

You know what makes infusions fly by? The Halifax Comedy Fest. And coconut ice cream, with frozen raspberrys and chocolate chips. Pick your chocolate covered poision and put it together with your favorite CBC show, and basically that’s the making of a fantastic evening. And I can trick myself into thinking this ‘invisible’ clear fluid isn’t all over my body, trickling under my skin.

It is going to be fine. It will be fine. It was fine before. I can do this again. That’s what I need to remember.

I can keep doing this until I’m better or at least until the world runs out of Coconut Bliss ice cream. ~

A True Holiday Miracle

We have officially become a fixture in the ER. 3 visits in 3 days is a new record for me.

I should start by saying I am perfectly alright, and that us spending an average of 5 hours in ER each visit was not a reflection on the medically seriousness, but on how awfully inefficient the medical system is in Canada.

Basically, I was having a lot of strange sensations and pain in my arm, around Christmas, so on Boxing Day we went to a walk-in clinic. I get a warm fuzzy feeling when I enter a clinic, and the friendly receptionist in designer scrubs greets us. The thrill of familiarity of checking boxes of symptoms and filling out my name and Care Card # (which I need hardly point out I have memorize?). The smell of kill-everything disinfectant and hand sanitizer. Okay, I joke. Those are all the things that really BUG me when we go to a walk-in clinic. Except for the friendly nurses :).

We were hoping to not have to go to the ER to have my arm checked out, and instead check and see if I had an infection or something. I have been feeling quite ‘low’ lately, sometimes an indication of something more going on than the Lyme. This doctor was, like, actually a wonderful doctor. We usually have to demand a basic CBC (blood profile), just to make sure everything is normal while I’m on the drugs, but it was like this kind doctor actually got it. I wasn’t the weird, trouble-making, difficult patient that some doctors seem to think I am. Meeting wonderful doctors gives me such a feeling of hope for the future. I know now that there are some excellent physicians out there, and once the BC CDC takes the heat off doctors trying to help Lyme patients, I think there will be loads of helpful doctors waiting to look after us all.

The doctor at the clinic was so nice and sent us to the lab at the hospital to get tested. That was when we discovered that my line wouldn’t aspirate blood (ie: we couldn’t pull blood out of the PICC Line). We could flush through saline just fine, but no luck with the blood. So of course, the way you solve all simple, little problems in Canada is to head to the ER. It is very frustrating for everyone (especially the staff and patients!) to have to wait so long for non-emergency care, but it’s the only way to get something done reasonably quickly. After a long wait, the put some TPA into my line, which is a kind of magic fix-em & clot-buster. It takes an hour for the stuff to work, so there was much knitting and audio-book listening. Well dose #1 didn’t work, so  they sent me home that night with another dose in my line, in the hope that my line would clear up.

The next day…still no blood. “Hunh? This is funny…It usually works.” was the response. I hear that a lot  though :P. So I had another dose (hours of waiting occurred in-between first seeing the IV nurses, and getting the TPA, and then them trying to take the TPA out. I condensed all that waiting into a few lines…lucky you guys!). The line turned out to be good an blocked, and we couldn’t get any blood for the blood-test, or for any other reason. The doctor was kind and a good listener, and suggested that we should pull out the IV line. This usually wouldn’t be a problem. They’d just put another one in and I’d be find to do my meds. But with no doctor in Canada willing to put in a PICC line for treatment of Lyme disease, this wasn’t an option. The truth is these lines are expensive, and I have been sick for so long and it costs so much money; how would we get another line? We explained the situation: how we couldn’t get any help here, and that this IV line was the only way I would every get better. He let us go home, telling us that someone would get in touch tomorrow about coming in for a dye-study, to see how the line was blocked, and if they could fix it.

It was much to our surprise that the next day we found ourselves in the imaging waiting room. The whole afternoon had a shiny, surreal feeling to it, as they kindly settled me into the clean room, politely asking which PICC line we’d like (so of course we chose the purple and blue one! ~kidding). They even managed to put the new PICC line in the same site as the old one, something they apparently hadn’t done before. They injected a little dye to help them see inside my body. Then there was a lot of poking in my arm with guide wires and several staff powwows before they got everything in order and slapped a clear dressing over everything. They sent me home with tons of extra dressings and such.

I was resting peacefully at home for about 6 hours after. The pain creeped up on me very slowly until I could not ignore any more the agony in my chest. Pain thrumming in my chest, making it difficult to breathe. I tried to articulate how I was feeling, but all that came out was slurred, broken sentences. So it was back to the ER again, with our mind on the possibility of a blood clot. I have to chuckle, even with the pain, as we explain to the intake nurse, that, no, we haven’t moved in the past 24 hours, and our contact information has remained the same.

Pain escalating, radiating from my chest around the back of my ribs, down my legs. Belly cramps. The pain was beyond my control, something that despite all my peaceful breathing I couldn’t think myself out of. They didn’t know what was wrong there, but gave me an IM of ketamin, a pain drug/low-dose anesthetic, which calmed things right down.

It wasn’t until we got home that we had time to put a couple of repeating patterns into a more succinct hypothesis. I have had severe chest pains before after having contrast dye. After MRI’s, after my CCSVI therapy. The symptoms, the way the pain traveled, was almost identical to those other times. So hopefully this means no more dye for me. It has always made me feel ill inside. Tight in my chest.

But on the bright side of all this, I have a Canadian PICC line poking out of my arm. A PICC line that was put in here means they have to take care of it. Wow. A true miracle, yes?

First Sale!!

Last night I got my first order for a PICC line cover through my Etsy shop from a lovely gal in the Mid-West. Needless to say I was over-the-moon jumping-up-and-down excited! I had only finished the armband that day, and hadn’t even had a chance to put it up on Etsy, so that was very quick turn around. I can’t wait to hear her feedback about the armband. Although I wear them myself, and am very self-critical about the product, it will be wonderful to get another opinion from a fellow PICC line user! The armband is already in the hands of Canada Post and on its’ way to a new home. I suppose this officially makes me an entrepreneur! Wow.

lace stitch panels in “Spun”

I know non-knitters could argue that most knitting stores sell the same products, by the same companies and most often in the same popular colorways, but that never feels like the case. There is always something new and exciting, and it would be impossible to remember all the different kinds of yarns available in specific colorways. Spun Fibre Arts is a Burlington store specializing in natural and organic yarns and fleeces for fibre artists! It was heaven. There was a lot of stroking as we strolled/rolled around the store. It just so happened that they had several colors of this cotton/elastic yarn I love to make the IV armbands from in new and exciting colors, and on sale. I can’t find it in any of the 3 knitting shops in Victoria, so I picked up three very beautiful colors; mixed hot pinks, mixed stormy blues, and a teal/purple/lavender/stormy blue striped mix. Hopefully these will soon be transformed from ordinary balls of yarn into something rather unique! I was excited to find a few more stereotypically male colors (blues), because until now I have had mostly  stereotypically girlie colors, and some gender neutral ones. I would love a blue armband myself, however, so I am careful to not always assume that blue/pink are for boys and girls, respectively. That is so last century!

prettttttttyyyyyyy

An equally exciting stop was at KindFood vegan/GF bakery & cafe, where we picked up 4 delectable cupcakes: Mint, Coconut, Chocolate, and Vanilla.

los cupcakes

Oh my goodness. We are saving them for after dinner, which is killing me. Fancies of icing and sprinkles are dancing round in my head. I was a tad bit excited about the whole experience. I’ve decided that at some time in my life, I am going to open a GF Vegan bakery & cafe, although I will need to firm up these plans with an idea of ‘when & where’.

outside the famous KindFood

Nothing could be better than the combination of cupcakes and yarn. Paradise.

Delish!

Sucks to have to do dressing changes on my PICC line, when I’m on vacation! No fair! I wish we could take a wee break and let my arm breathe, but obviously that can’t happen. The little end cap where you ‘plug-in’ a syringe wouldn’t come off yesterday, no matter how much Mum twisted. We went to a home nursing place this afternoon, and asked one of the nice nurses to help unscrew it. Thankfully they managed to get it off okay. I can’t imagine what we would have done if they couldn’t undo it. We also had yet another chance to talk to nurses about Lyme disease, an opportunity we never miss. The nurse’s sister had Lyme, so she was very understanding. I also got to show off my PICC line armbands to an appreciative audience…they thought it was a really cool idea. Maybe when I’m back home I can approach a home care centre about carrying the covers…that would be very cool, don’t you think?

Happy Vegan Food Day everyone. In honour of this very special day, we went to Kind Foods vegan/GF bakery with Gramma, and Mum of course. They were all sold out of cupcakes, but the cookies were delicious!! I also had the most amazing B.L.A.T (fake bac’un, lettuce, avocado and tomato) sandwich on fantastic wheat-free bread. The bac’un was indistinguishable from the real thing, from the texture to the taste. Sensational! Oh my. I could eat that every day, and I never really liked real bacon. WOWWOWWOW.

I have been feeling so hungry inside. It is not usual for me to feel odd sensations, or lack of, in my body, which changes as frequently as the battlefield of Lyme in my body. It is so odd to suddenly feel this way, after not wanting to eat for so long. But no complaints. I feel like gaining weight would make me feel better all-round.

Clean, Cleaner, Cleanest


clean-up

Finally my dressing was cleaned up yesterday. Its so nice to not have to feel faint and nausea every time I look at my left arm. The lovely office manager used to be a PICC line nurse, so she has been wonderful. A record fast dressing change this afternoon.

Its not that long of a drive to the office in New Port Beach. The traffic isn’t even that bad. The view is beautiful…the highway follows the coast all the way, so the views are spectacular. Ever few miles, we seem to hit a town center, but the rest is houses, tucked into planted lush oasis’. Elaborate sprinkler systems snake through tangles of exotic plants, bringing a welcome drink to the thirsty foreigners. I’m sure the local fancy cacti snub such plants, looking down on the vegetation that can’t survive without water from their masters, the gardeners.

freeway-side beaches

Waiting in many doctors offices in states and provinces is the perfect opportunity to strike up a conversation with other patients who understand what you are going through. In the earlier days, we had many questions for the veterans of Chronic Lyme, trying to use as much of the hard-earned information as we can. I kind of consider myself a Lyme-life warrior, not yet home from the war, but battle-fatigued, in a Babesia-induced sweat, ready to bare my teeth again at the sign of another Herx, or some other fresh terror Lyme is ready to offer. I met a lovely young woman in the Synergy Health waiting room. She was from Windsor, Ontario, of all places, suffering from what was diagnosed as MS. Aiisha is her mid-twenties. We struck up a conversation, and instantly connected because I had had the CCSVI (and she was hoping to have it), we were both young and in a wheelchairs. Her speech and movement was shaky, and reminded my mum of how I sounded at my worst. After meeting so many people sick with Lyme disease, it becomes easier to spot people who could have Lyme disease. The way someone holds themselves, the lines in their face, tensions in their hands, a haggard look in their eyes, their story that begins with confusion and a long illness and many doctors visits until the MD’s pull a diagnosis out of the pocket of their white coats. I hope this procedure (CCSVI) helps her. Hopefully they can look into whether she has Lyme disease. Wouldn’t it be nice to have something treatable like Lyme, versus MS?

Shortly after leaving the doctors office, I noticed my arm was wet. There was yellowish fluid leaking out of the dressing (presumably from the site). It even got all over my new knitted armband!! If there could be anything worse than blood, it would be icky fluid (hmm…perhaps this is a close second). We tried calling the office, but, just as our luck would have it, they had just closed. After some debating, we went to the ER at a nearby hospital, where we waited for a long while, before getting a call from the clinic’s office, advising us to go home. I wasn’t looking forward to having a very expensive ER visit for a problem that could probably be fixed at the doctors office.

The dressing was just disgusting by this afternoon, but I wasn’t terribly worried. I mean, it was all covered up with a foamy wrap, putting pressure on the site. So I couldn’t see it, which to my very irrational brain meant everything was fine, fine enough to go to a used store in Laguna Beach and browse the racks. ‘Looking gross’ isn’t really a medical problem, and besides, I figured shopping would be a welcome distraction. I was just trying on some clothes when I became aware of the wetness of my arm. It was a very unnatural feeling, and when I removed my armband, I realized with a trill of terror that my arm was covered in blood. WHY does this sort of thing happen to me? It was all I could do not to scream right there in the crowded store. Paper-towels, rolling to the car, pressure on the site. It is difficult to breath or think when there is blood anywhere near me, least of all coming out of me, smelling of dirty pennies and heat.

We went back to the ER (did they miss me? clearly I was missing their company 😛 ) and had a doctor check out my arm. It is easier for me to remain rational in such a clean space as a hospital, surrounded by cleaning supplies, a pleasant distraction from the mess. It was strange, but the site of the incision, where I had the CCSVI procedure and then the PICC line inserted, was clean, and the blood was down my arm, caught in the gauze ring of my dressing. It was as though it leaked from no where. This is preposterous, but still, we couldn’t figure it out. So now I have a moderately sterile dressing on my arm, awaiting another dressing change tomorrow. Missing the beach right now.