When it walks like a duck

You really gotta have a sense of humour when it comes to putting your life in doctors’ hands. Let me back up a few months just so you can all enjoy the laughter with me.

Back in September we called an ambulance because I was unable to move my legs. The days leading up to it I knew my (lets go with) neuropathy was being triggered so when we got home from the cottage and I couldn’t move, I suspected this was a flair. Long story short the Emerg doctor was confident that we needed to do both a head CT and an MRI. However, after so many hours the emerg doc has to let the floor (the department) take over and in my case, Neuro took over. The “senior” resident was sure to ask me all of my symptoms and when I assured him I was able to understand medical jargon because I have a masters in neuroscience he proceeded to explain what a neuron was. His own jab at being a “senior” I guess. After 12 hours – and only a CT head – the doctor assured me it was ‘all in my head’, scribbled a cognitive psych website for me to visit and sent me home. Much to his dismay, Mrs. Gandhi asked to speak to him an hour later and tore him a new one (not me… my mom. You dont want to mess with her).

Since then symptoms continued to get worse. Tingling in my hands and legs that feel like wool, spasms of any kind, anywhere, pins and needles, overheating, shooting down my spine, lower back pain, brain fog and dizziness. I asked ALL of my doctors to assure me a brain MRI would get done, and it was. All clear. But that didn’t appease me since it gave me no clue and no tools in my box to work with the symptoms. Out of nowhere I get a call from the Neuro dept at the Ottawa Hospital saying ‘we are sorry we have to move your appt up. Your Neurologist is able to see you on Jan 20th’ to which I replied ‘I don’t have a neuro doc”. She says “oh sorry I missed this was an initial consult”. I could not be happier.

Jan 14th, I got covid. And while symptoms were manageable, day 4 hit and exacerbated all of the ‘neuropathy’ symptoms. I hadnt pooped in 6 days, I was walking funny, dizzy as all hell. But as long as I could hold out for this neuro consult over zoom I could get some answers.

12:55 and I am logged into zoom, waiting for the host to take over. 1:00pm – there he is, like a bad memory – the emerg Doc. Fuck Fuck why didn’t I put two and two together that this was a follow up. Ok breathe we can get through this. I have nothing to lose. Low and behold, he started with an apology. His kind of an apology but an apology nonetheless. Then we spoke about all of my symptoms with some intermittent “why didn’t you tell me about this last time?” which was met with a blank stare. We got through it though and at the end he says he needs to speak his superior but he agrees this looks like autonomic neuropathy. He mentions Lyrica and how it can help but also how it might make some things worse. Then he puts me in a holding room for 20min.

When the two doctors emerge into the zoom room, the senior doctor does the one thing — the one thing that will make my blood boil. “So, tell us, how did this all start?” — are you kidding me right now? You didn’t cover that when you were chatting for the last 20min? I say “well it started in Nov 202-” …”No, just the tingling” he says. Oh… sometime in the summer.

Ok – so this may be a neuropathy and, if you liiiiiiike we can refer you to another doctor who can do some tests on your nerves such as a skin biopsy. YES FUCK!

But this could also be what Dr Emerg boy told you about when he first saw you which is a functional neurological disorder. Blank stare. “And what is that?” I asked. “So you don’t remember having this conversation in emerg?” he asks like a prick. I dunno, indulge me and tell me all over again. K grab onto your hats for this one:

“We used to call his hysteria but we have done more research to understand that you don’t need to have a history of mental illness to have a functional neurological disease. Basically unlike a degeneration of nerves like MS or Parkinson’s the nerve signals are sent to the wrong part of the brain (aka functional) and your brain cannot compute so it shuts down. Trust me I have seen this a lot in my practice”.

And treatment? “If you are going to go into this with an open mind, we can ensure you see a psychiatrists”. If you were a fly on the wall you would have seen my demeanour change. Not because I am against psychiatrists but because Dr. Emerg asked me at the beginning of the session (alone) if I would consider confiding in a therapist just to ease the burden of all of this. And now its being thrown at me in a different kinda way. Needless to say, I asked “and what about not being able to poop for over a year?” to which he replied “yes I see you have a GI, you’ll need to ask him. Maybe someone who can look at the nerves innervating the colon.” {insert angry face orange emoji}. “But I would start with the psych website we gave you in Emerg and try to have an open mind.”

Before the Senior Doctor left he asked if I had any other questions and I said “so when the results come back will you refer me to someone who actually has an expertise in this area?” and he said “we can discuss it at the time”.

What ‘fighting for care’ really means

It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual I set the heating pad on medium and laid flat on it for 10min before crawling desperately out of bed. I showered, praised the lord I didn’t have to wash my hair, made my coffee and then settled into work. Yes I work from home and this particular day I was able to to work from my couch.

At 9:30am my rheumatologist called to go over my symptoms as one theory is the entyvio/vedolizumab is causing the back pain. While there is one publication indicating as much, these patients had progressive arthritis which I seemingly do not have. Needless to say we kinda parted ways at this point. Before hanging up I let them know about my MRI of the lower back – ordered by a doctor out in Toronto who thinks I might have a compression – and she asked me about what else is going on with my health. We talked about the neuropathy symptoms and the MRI of the brain which ruled out MS. She said ‘it looks like a doctor referred you to a neurologist specifically to rule out MS and it has been, so you don’t have a queued consult anymore”. Reasonably so, I went into a tailspin because that was the one appointment I had been holding out for.

I immediately got on the phone with my GP and left a message about this supposed canceled (or completed) consult and that without a new neuropathy-specific referral we would never get to the bottom of this. My GP and I are generally on the same page about this so I was not worried he would push back.

While I was trying not to get heated, I was hammering away at work, listening to a patient story about ordering one of Invitae’s genetic tests and she said “genetics doesn’t have to be used as confirmatory it can also be used as exploratory”. Here I was, working nearly three years for one of the best diagnostic genetics companies in the WORLD, and I had not looked to see what I could utilize. I got online to Invitae.com and downloaded the requisition form for the Alnylam hTTR no-charge sponsor program which I felt was finally time to order. I emailed it to my GP and offered to do the leg work if he wouldn’t mind submitting it for me.

Hours later, anticipating my period and pushing back some oncoming muscle twitches, I decided to use one last tool in my box. I decided to text (yes this is his preferred method of contact) the doctor in Toronto who ordered me the last MRI (which is on Sunday!!!). I asked if it was possible to see a neurologist. Immediately he said YES. But what I had not realized was, he thought I was asking to see HIM. Sadly, with the pandemic and not being able to tolerate long car rides, I asked if he could refer me to a local neurologist. He said “it would take 1-3 years”, and that was that. Nearing the late afternoon I chalked the day up as a whirlwind and was hoping I’d have a callback or an email in my inbox by the morning.

Logging on to another work session, the hospital called me again. This time it wasn’t the automated appointment reminder and it wasn’t the rheumatologist. ‘Hi Ms Gandhi’ she began, “I am so sorry but we had to cancel your appointment for Feb 24th but Dr. M would like to instead see you over zoom on Jan 20th instead. I know it’s last minute”. … “That’s fine I,… sorry… what doctor is this for? I mean… what type of doctor?”. Confused was putting it lightly. “Oh this is for your neurologist”.

“I don’t have a neurologist” I said politely.

“Oh, sorry I missed that this is your first appointment with him. Is it still ok?”

Shocked and elated I of course said yes, got on my patient portal to confirm and sat in shock for about 10min. I called my GP back and spoke to a human (my favourite lovely human who always helps me out) and told her (the admin) what had happened. We agreed to put the genetic test and the pain meds on hold until we had some data to go on.

What a day.

Just a sick girl’s rant

I don’t know who is out there anymore or who subscribes to blog RSSs (is that what they are called), but I started out on this blog for me so hey, here we go. I don’t know how to do this anymore. The symptoms, the drugs, the expectations. It’s all heavy, you know? Like, you have this layer of existing that just seems to float through life. And then, there is this thin layer of grime that occurs on that light thin layer, when the drugs weigh in. And then on top of that there’s like a molasses layer when the fatigue sets in. And then sitting on top of this molasses layer are bumps – these things that hit life and set you off course a bit like when you stick your arm out of a moving vehicle on a windy day. Those bumps are all the expectations people put on you cus hey ‘you have a role in this life and you need to live up to it’.

I used to hate the slimy later of medication side effects but without it now, I feel like I have nothing anchoring me to the ground. Have no medications that helps and Im just floating and fluttering without any real direction. For me I spend way too much time focusing on each new symptom; a twitch on the arm, loss of feeling in a finger, difficulty swallowing. I spend too much time analyzing my bowel movements or my cramps. I put stock in one good day and then get miserable when I try to replicate it and it all turns to shit. And while everyone around me keeps moving and living and wondering about cool shit, I just hope and pray that the doctor is going to call me. With every new negative exam that comes through my patient portal I feel dread of having a diagnosis and equal or more dread of not having a diagnosis. It’s all so heavy. Every single day I am expected to just go on with my life, like it doesn’t hurt. Like it doesn’t just hurt so bad. One day the doctor will call. That’s that they say. These things take time. I wish I could sleep it all away sometimes. You know? Like just hang up my coat, crawl into bed, close the curtains and sleep. Sleep for days. Sleep for weeks if I have to and then come back to life when the doctor is ready to see me. But I cant do that. I have too much going on. We all have too much going on.

Swedish Meatballs with Peas

This recipe has a great sauce that allows you to simmer any vegetable while it all thickens. We chose peas but you can select any vegetable of your choice.

What you will need:

  • 1/4 cup GF crackers, crushed in a bag or mortar and pestle.
  • 2 tablespoons water
  • 1 lb of ground meat (we do half turkey and half beef).
  • 1 egg
  • 1 teaspoon Italian seasoning
  • 1/2 teaspoon salt
  • 1/2 teaspoon pepper
  • 1/8 teaspoon nutmeg
  • 1 1/2 cups beef broth
  • 1/2 cup coconut milk
  • 1 tablespoon worcestershire sauce
  • 1 1/2 tablespoons corn starch
  • 1 clove garlic, minced
  • 1/2 teaspoon oregano dried
  • 1/2 teaspoon thyme dried
  • salt and pepper to taste
  • punch of nutmeg
  • 1 cup frozen peas

Preparation:

In a large bowl, combine the crushed crackers, water, ground meat, egg, Italian seasoning, salt, pepper and nutmeg with hands until well mixed.

With hands, form the mixture into balls of your liking.

In a deep nonstick pan, heat one tablespoon of cooking oil and then add the meatballs to the pan. The meatballs will start to cook. Allow the meatballs to cook on low-medium for several minutes until you can see the meat cooking through. When comfortable, turn the meatballs. Cook through even more, and then shake the pan to get the meatballs to unstick from the pan.

In the meantime, mix together the broth, coconut milk, worcestershire sauce, corn starch, garlic, and spices in a bowl. Whisk together until well mixed.

Once you have shaken the meatballs in the pan, you can add the sauce to the pan, add the frozen peas, and mix slightly before allowing the pan to simmer on low-medium for 10min or until the peas cooked through.

Serve while hot.

Curried Cabbage and Trout

This is a bit of a cheater meal as it requires a pre-bagged batch of slaw. Feel free to make your own slaw if you need a bit more of a home made touch.

What you will need:

  • a small onion, diced
  • two tablespoons olive oil
  • 1/2 teaspoon turmeric powder
  • 1/2 teaspoon chilli powder
  • 1/2 teaspoon salt
  • small bag of cabbage ‘slaw’
  • 1/4 cup water
  • 1 cup cherry tomatoes, halved, or 1 cup tomatoes diced
  • tablespoon olive oil
  • 3-4 trout steaks
  • salt and pepper to taste

Preparation:

In a deep frying pan, pour the oil into the pan and set to medium-high. Add the diced onions, turmeric, chilli powder, and salt. At this point you are cooking the spices so you may need to turn on the hood fan. Cook and stir continuously for about 5 min, removing any bits that stick to the pan.

Turn heat down to medium and add the onions. Allow the tomatoes to break down, so stir frequently and keep cooking for about 10min.

Add the bag of slaw and water to the pan. Reduce to low-medium and cook covered for 10min. Stir frequently to remove any bits sticking to the pan. When the cabbage is cooked through, remove pan from heat and set aside.

In a non-stick pan, add a tablespoon of olive oil and heat at medium. When oil is hot, add the trout skin-side-down and add salt and pepper. Cook on medium until you can see the bottom half of the steak cooking through to almost the halfway mark.

Flip the steak – remove the skin if you don’t like skin – and continue to cook until fully cooked through or to your liking.

Plate the cabbage and add a trout steak on top.

Serve while hot.

Maple Cut Out Cookies

This recipe is gluten and dairy free, however, for the cookies to spread naturally we add some sugar and replace the rest with maple syrup.

What you will need:

  • 3/4 cup unsalted vegan butter, at room temp.
  • 1/4 cup white sugar (this is reduced from the original recipe)
  • 1/2 cup maple syrup
  • 2 eggs, at room temp.
  • 2 3/4 cup GF flour (add xanthan gum if not included in flour)
  • 1 teaspoon baking powder
  • 1/2 teaspoon salt
  • leaf shaped cookie cutters
  • Optional: maple sugar

Preparation:

In a large bowl, cream the butter, sugar and maple syrup.

Add the eggs and continue to cream. The mixture will be wet since we replaced the sugar with maple syrup.

In a medium bowl, add the flour, baking powder and salt.

Mix the dry ingredients into the wet ingredients and form into a dough. When fully mixed, split into two dough balls, cover each with wax paper and refrigerate for at least an hour.

Preheat oven to 350 degrees. Prepare two baking sheets with wax paper.

Using one ball at a time, roll out on dusted countertop until 1/4 inch thick. Using a flour dusted cutter, cut out shapes from the rolled out dough and place on lined baking sheet. The cookies will spread slightly so keep cookies apart.

Bake cookies for 8-10min or until the edges turn golden brown. Cool on cooling wrap before icing.

For the icing, I used an icing sugar based recipe in a piping bag and drizzled the icing sparingly.

Optional: sprinkle with maple sugar.

Unbelievably good vegan scalloped potatoes

You will not believe how good this recipe is. It makes a lot, so you’ll have tons of leftovers!

What you will need:

  • 5-6 medium potatoes, peeled and sliced with a mandoline
  • 3 cups non-dairy milk
  • 1/4 cup GF flour
  • 1/3 cup nutritional yeast (don’t skip this – its key!)
  • 1 vegetable bouillon cube or about 1/2 cup vegetable broth
  • 11/2 teaspoon garlic powder
  • 11/2 teaspoon onion powder
  • 1 teaspoon dried thyme
  • paprika, pepper, cayenne to taste

Preparation:

Peel and slice your 5-6 potatoes then cover with water in a bowl to prevent from browning. Set aside.

Preheat oven to 425. Prepare a casserole dish with oil spray.

In a medium sauce pan, whisk together the non-dairy milk, nutritional yeast, broth (or cube) and all the spices. Bring to a simmer and whisk continuously on medium heat until sauce thickens. Reduce heat and simmer for 5 min.

Drain your potatoes and start with a layer of potatoes at the bottom of the casserole dish. Continue to layer half of the potatoes and then pour half the non-dairy mixture on top of the potatoes. Jiggle the casserole dish so the sauce gets into all the spaces between the potatoes. Layer the rest of the potatoes, add the remaining sauce, and jiggle to spread.

Cover casserole dish with foil and place in oven for 20min or so, until the potatoes are cooked through.

Let sit uncovered for 5-10 minutes to allow the sauce to settle (and cool). Enjoy.

Veal Acorn Squash

The contrast of the veal – which has a naturally gamier taste – is perfect with the sweetness of the acorn squash. In fact we enhance the contrast through the cooking process, making these flavors really pop. My advice is to cook the onion and set aside. Prepare the squash and put it in the oven, then set the rice to cook, then start the meat filling. This way everything finishes around the same time.

What you will need:

  • 1/2 lb ground veal (beef and turkey are good substitutes)
  • 1 small onion
  • handful of cashews
  • 1/2 cup cooked rice
  • 1/2 tablespoon dried coriander powder
  • 1/2 tablespoon dried cumin powder
  • paprika, salt, pepper to taste
  • 2 acorn squash halved
  • olive oil or coconut oil
  • maple syrup

Dice one small onion and saute slowly until translucent. Set aside

Preheat your oven to 350.

Prepare one baking sheet with foil.

Cut the two acorn squash in half, and take out seeds. Coat the inside flesh with olive oil and then put the open side down on the foil.

Bake the squash for 35min. At the 35min mark you’ll flip the squash over onto the skin side, and pour in a dab of maple syrup into the centres, and then cook for another 5min.

In the meantime, add uncooked rice to water (as you would normally cook rice) and add the cashews so they cook with the rice. Set aside when cooked.

Cook the veal in a deep frying pan. Drain the oil and bring back to the heat. Add the onion and spices and mix well.

Add 1/2 cup of the rice mixture to the meat mixture to combine. If you prefer a more or less starchy ratio, feel free to add as much rice mixture as you like.

When the squash are done, spoon the meat-rice mixture into the centres of the squash, and enjoy.

Breakfast Cookies

Since this recipe is vegan, we need to start off by creating a flax seed egg. If you prefer egg, go for it; if you wanna try this its super easy.

What you will need:

  • 2 tablespoons flax seed, ground with a grinder or mortal and pestle
  • 5 tablespoons water
  • 2 cups GF rolled out
  • 1/2 cup shredded coconut
  • 1/2 teaspoon baking powder
  • 1/2 teaspoon baking soda
  • 1/2 teaspoon sea salt
  • 3/4 cup almond butter
  • 1/2 cup maple syrup
  • 1/2 cup dried cranberries
  • 1/3 cup hemp seeds
  • 1/2 cup sunflower seeds

Preparation:

Begin by adding the 2 tablespoons flax seed to 5 tablespoons of water; mix and set aside for 10min.

Preheat oven to 350-degrees. Prepare two baking sheets with parchment paper and set aside.

In a large bowl, add the dry ingredients (oats to salt on the list).

In a medium bowl, whisk the wet ingredients (almond butter, syrup, and flax egg) until well combined. Note: if you have not worked with a flax egg before its basically flax grounds covered in goop.

Combine the wet and dry ingredients together. Fold in the berries and nuts desired until you have a well mixed batter.

Using a 3 tbsp ice cream scoop, scoop batter onto prepared sheets. Keep them a good inch apart. Using a wet palm, press down on the scoops to flatten the cookies (they will stay in this shape while baking, there should be no spread).

Cook at 350 for 18min. Transfer to a wire cooling rack until cooled completely.

The Shittery -volume 1

I haven’t written a post in so long, and honestly, I was afraid that with everything going on I would just be a wet blanket. The fact is I was going in circles trying to figure out how my gut health – something I have worked so hard on – could all go down the tubes after an excision surgery. And now, 11 months later, I’m more confused than I ever was because of the last three days. But let me back up.

In October of 2020 I had a 6 hour laparoscopic surgery to remove endometriosis and adhesions from the span of my ovaries to my lungs. Luckily the endometrial growth was minimal but extensive work was done on my bowels and left ovary to remove them both from the abdominal wall by way of adhesions. Within a day of my recovery I could feel the difference; the way I was able to expand my lungs, the way I could move and twist, the way I had more energy than before. I used very few hydromorphone pills and was able to walk and move around to the best of my abilities. The only hiccup I had was a fussy nerve along the side of my pelvic wall which we fixed with a nerve block. The goal from this point onward was to switch me off of Gabapentin (which I was on after my 2018 surgery for central sensitization) and try me on amitriptyline which my doctor has seen better results with. As for endometriosis and pain, I was to continue on birth control (oral contraceptive of combination hormone) on a continuous basis so to skip my periods, reduce the pain and potentially limit the estrogen that fuels the (re)growth of endometriosis. You can pause on that one if you’d like. I did.

About 4-5 weeks after my surgery, while still recovering slowly at home, I noticed I was having difficulty with bowel movements. Not only were things not moving well, but I wasn’t able to push anything out. So began the whirlwind trial and error of laxatives, stool softeners, fibre, enemas and suppositories. My GI reluctantly gave in to my request for more tests and much to my dismay everything kept showing up normal. On the contrary my symptoms were getting worse AND I was starting to have reduced mobility because of the laxatives. Around the 5 month mark I threw my hands in the air and stopped everything. I turned to my osteopath and my naturopath after realizing that both my GI and my endo specialist were not able to help (or… not optimistic in finding a solution). I have to give my surgeon credit, he took me off the amitriptyline because of its constipating effects and was more than happy to learn about SIBO (see next paragraph).

For those who are naysayers on the natural therapies you can skip this part but basically my osteopath could conclude I had a lazy bowel and my naturopath was able to conclude with a gold standard breath test that I did in fact have SIBO.

For those of you who prefer the more medical flavor, I had a defecography which showed ‘stasis {was} severe’ and a 1.3cm rectocele (a hernia that protrudes from the rectum into the vagina). Yay me! But none of this, in conjunction with some blood work was anything to cause alarm. I proceeded with the natural path so that I felt like I was doing something.

SIBO treatment is still ongoing at this point BUT in phase one – opening the biofilms – my flatulence decreased significantly after 5 weeks. Into the second phase – eradication of the bad bacteria – I started to regain complete mobility. COMPLETE MOBILITY! That was worth celebrating!! But I did not regain the ability to literally poop. So, I started taking a suppository every day and this was enough to poop out the most glorious poop. Once a day. Regular. Nicely shaped and sized. I mean this was something worth sharing LOL. Anyways… now we come full circle. See, aside from all the changes that were made to my body after the surgery the one thing that remained consistent was… the birth control pill. I don’t want to lose you here because at this point I am perplexed and fairly confident I will never know the right answer to any of this but …

A few days ago, around the 11 month mark of all this fecal chaos, I talked to my naturopath again about the PMS, boob swelling, cravings, and discharge – what feels like a period – minus the bleeding. She said sometimes the body’s own estrogen levels can combat the effects of the birth control pill. That same day I felt like I was bleeding but I wasn’t. I did what any insane person would do; I stopped the pill to just allow myself to have a period once and for all. That same day, I had the urge to poop and I was able to poop: 2 things I have not experienced in ELEVEL MONTHS!!!! What did I do? I texted my mom, my sister, my fiance…. I danced. The next day and the next day? same thing. Urgency and poop.

Is it the prostaglandins? Is it the naturally constipating effects of the pill? Is it the certain levels of hormone that are being maintained with the pill? I found this quote today which kinda sums it all up:

Studies have shown that oral contraceptives negatively impact gut flora, and estrogen metabolism. This can lead to weight loss resistance, increased risk of irritable bowel syndrome, depression and anxiety, and unresolved digestive issues.

Nutrition Rewired

In the end, this is an n of 3 days, and I have shifty data points to base all of this on. But all that to say, I thought back to why I was on birth control in the first place. Yes, of course to minimize the pain (dysmenorrhea) from my periods; no not as a method of birth control; but mostly because of the theory that it could prevent new or existing growth of endometrial lesions. I posted the question on social media today and there was a resounding NO IT DOESN’T PREVENT ENDO BECAUSE:

  • The theory only works on the retrograde menstruation theory.
  • Endometriosis fuels itself by producing its own estrogen.
  • Many individuals on birth control had growth of lesions between surgeries.
  • Menopausal and post menopausal individuals who inherently have lower estrogen levels maintain their existing endometriosis and may produce a new form of endometriosis by way of hormone replacement therapy (HRT).

Complicated, right? Well I have one more week until I speak with my gynaecologist but Im thinking this might be an excuse to do my own little case study off the pill (I’m secretly jumping for joy right now).

Thanks for tuning in to my shittery:)