Better Days

As the days coast by, I realize I am slowly, and I hope surely, getting stronger.  I was still struggling with food, and getting quite despondent, when suddenly something happened. Either the Tacro miraculously found its equilibrium, my body had excreted a substantial amount of toxins with the extra hydration or the vitamin D and fish oil kick started things. I decided I wasn’t going to wait anymore for a professional to tell me whether or not those supplements were OK. Besides, I am a professional myself! And the head pharmacist on my team (not involved in the Tacro fiasco) was straight with me months ago when he said then, later, but not yet. So now is later, and I can feel my body starving for oils and getting hormones balanced again. My skin especially, as it is beginning to peel from the irradiation I had months ago. It looks horrid. I assume they will approve the D vitamin anyway since I am to stay out of the sun for a year, so I had no qualms with that. I am also taking probiotics to kick my gut back into shape, and I’m not embarrassed to say, as a new mom would of their newborn, that I had my first real BM yesterday and it continues today. So something has shifted, indeed. My appetite is getting better, though some foods still taste about 60-70% normal, while others are just fine. I can now add shrimp to that list, and beef, and granola bars! What this means is that my spirits and energy are UP!

Yesterday, the whole family ventured into town. We had to go late in the afternoon because I was getting two infusions at once, saline and magnesium, and they required four hours in total. Once the Mg was done, I strapped the portable pump to my waist (remember those fanny packs?) and off we went. I was on the hunt for SPF or sun protection clothing without having to order from the US or Australia, and there was a rumor a store in Kingston carried some. When I called that morning to find out, however, I discovered a private home with a frustrated owner who would prefer not to receive ten calls a day about this business that apparently went under and didn’t take their number with them. So my next options are Ottawa and Brockville, which we will go for on Tuesday.  This left us with only two errands, getting bigger clothes for Skyler who is having a growth spurt, and redeeming his gift card from ToysRUs. We had success in both areas; I picked up a wide brimmed visor for $2 and a wide brimmed flowered hat for $3, plus a pair of slip on shoes which I love because I hate fussing getting my feet into shoes. Even though the store was pretty crowded (it was Saturday, after all) I didn’t feel endangered in any way and constantly used my portable sanitizer.

By now we were hungry, so we headed to our favorite hole in the wall, the Wok In, because I had my heart set on #4: Vietnamese rice noodles with delicious sauce and spring rolls that Jessie and I would share.

Somehow we ended up with an extra dish that became my lunch today, once Pete removed the hot sauce, and I am proud to report that I had a load of rice and three whole shrimp! This doesn’t sound like much, but for me it is a triumph as I could not tolerate shrimp a few weeks ago. Fabulous as the food is at the Wok In, it is slow, run by a mom and pop who are constantly on the move and fussing over the hot stoves and fresh ingredients. As usual we judged how long things would take in relation to the ferry schedule. We arrived at 5pm (the ferry leaves at 6), but everyone knows you need more than an hour there, yet somehow the take outs always get priority… Then Jessie piped up, hey, it’s Saturday! We don’t need to rush! So we all agreed with her wisdom which Pete and I felt should be rewarded with some White Mountain Ice Cream on the way home. We all had tiny amounts, but even so, I was able to happily eat all of mine! Go, calories, whatever you are!

I should mention that as of yet, we have not heard a peep from the pharmacy in Ottawa, which is distressing and disappointing. Pete wrote a letter to the head, explaining the trials I had gone through because of their error, which includes the daily magnesium and potassium infusions to combat fatigue and nausea. Trials that not only affected me physically but also mentally and emotionally. Ever since hearing this was to be my “honeymoon period”, I’ve been waiting for things to get easier, and it’s taken this long to get even close. How many weeks of recovery have been wasted? He also pointed out that others have suggested a law suit, which we will not threaten but did mention.  Mostly we would like some kind of response, some compassion, perhaps asking how I am doing now, or if there is anything they can do to make things better for me, or if there is some possibility of us helping them develop a better policy to avoid such future mistakes.  But we’ve heard nothing at all. If this has happened before, were any changes made or was it ignored? Who knows? Something has to change before someone else gets hurt. So we got fed up and faxed the clinic yesterday. We’ll see what develops.

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6 thoughts on “Better Days

  1. I just want to add how amazed I am at Sus’ determination. A number of days ago, when things were not going so well, Sus started talking about going on this “adventure” into town. She was preparing herself mentally to burst out into the real world if just to do a couple of everyday things. That goal helped ready her for our successful little trip. Part of me was worried that it might be a disappointment, but Saturday morning looked OK. Just the idea of eating at the Wok Inn was a gamble. It has been so common for an attempt to eat something at home to turn into a rush for the basin to catch her digestive tract’s “Oh no you don’t!” response.

    When on top of a bit of Thai noodles, Sus was able to eat a small scoop of ice cream, I knew things had really changed. Let alone all that walking around.
    I feared today might be a day of recuperation for all that exertion, but today has proven to be by far the high water mark of energy and eating.

    Sus is going to beat this damn fight. Amazing that she should have been at this point in her recovery weeks ago if not for poisoning her system with 10 times the dose due to a decimal error at a pharmacy. Sus, however, is pushing past that and just focusing on getting better. Let’s see if she’s gained a bit of weight at on our Tuesday visit to Ottawa.

    And here’s hoping that her Tacrolimus levels are finally on target. The signs are good!

  2. Hey Sus and Pete. Very positive, thanks for keeping us in the loops. Hey was it the Northern Reflections outlet store that you tried for the SPF clothing? We have had luck there in the past, though when I bought a shirt for Harper last fall it was off a kind of clearance rack. Still, at that point, off season, they had a bunch of adult shirts. It’s on Norris Court.

    1. I don’t know about Northern Reflections, but there was a sun protection clothing store on Norris Ct that went out of business. I’ll look into it, thanks for the tip!

  3. Shrimps and ice cream… now that IS a triumphant re-entry into the world of food! Congrats – I truly can imagine your glory with this!! As well, bravo for your foray into the streets of Ktown! I participated in a running race this past weekend that somehow I feel would appeal to your sense of fun and drama– a zombie run! It was a 5k cross country run with a twist… hiding in the bushes, trying to grab your “lifelines” off of your belt were runners dressed up as zombies! It was hilarious and so exhilirating. Alexander and I in the first wave sent off at 5:30 a.m. and man, was it the real thing! Have fun poking around Facebook with “Outbreakmanila” or see their website. The YouTube video they did was hilarious. Never a dull moment across the world in the Philippines. My sister lives in NZ, so let me know if she can bring anything with her regarding SPF clothing, as she is visiting Ktown arriving on June 23.

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