My journey on the AIP road

[alexandra]

I'm going to paste the few texts that I've already written to have an overview of my journey so far from the beginning.

The Beginning, may 23 2014
My name is Alexandra, I'm 34 years old, I'm French, but I've been living abroad for 14 years, we are currently living in Dubai, 5 years ago I was diagnosed with Myasthenia gravis.

Myasthenia gravis, what kind of beast is that?



Myasthenia Gravis


It all started with double vision one night, and then the next, and the next...

My luck was to come across a very competent doctor in the ophthalmic hospital of Lyon, who immediately suspected MG, some people spend years suffering without knowing why.

Fast forward 5 years, my MG is stable, my eyes, arms and legs are the parts of me that are malfunctioning more or less randomly.
Some days I only have my eyes that see double, other days I can not get into my bath without help or even brush my teeth.
Some weeks I do a lot of sports, others I 'm struggling to get up of bed or climb my stairs, it varies, mostly depending on my hormones.
But I would say I'm usually good with some bad days per month.

I take mestinon 60mg, the dose depends on the day, on the good days I take 4, on the bad days 8 and above.
I was advised thymectomy (removal of the thymus) and the administration of corticosteroids to suppress my immune system, I have hitherto refused, especially because I currently live in Dubai and the care is private here, the more interventions prescribed for the patient, the more money the doctor gets. It doesn't really inspire trust in the medical system here.

A month and a half ago, I decided to go on a diet, and yes like all girls I think I have a few kg to lose, I followed the advice of a friend who had done a diet proposed by gym here, it went something like: cut everything, milk, sugar, gluten, caffeine, you can have meat, green vegetables and sometimes you are allowed fruits such as berries ( blueberries, raspberries ... ) other days nuts, and other days still some carbs or legumes like carrots, lentils, chickpeas, and of course 3-4 liters of water and / or green tea.Plus each day you get an exercise video, and finally some days you have to fast, some times for 17h and once for 24h.

The diet was a success, but what was even more amazing was the reduction of my symptoms, so much incredible energy !
This diet lasted only two weeks (I counted the days, especially at the beginning), the following week, I started to reintroduce gluten, sugar, and milk in my diet, and there downhill it went, a truly horrible week, my legs were not working, my arms hardly either, and don't get me started on my eyes.

And then the penny dropped, I started researching autoimmune diseases and diet, and the more I found, the more I read The diet I had been doing, was close to the Paleo diet.


When I think I waited 5 years to take my health in hand, and not just defer to a traditional medicine that sees me as a statistic, I want to slap myself, but the past is the past and I am determined to go forward.

I contacted a nutritionist here in Dubai who treats many patients suffering from autoimmune disease and who knows the paleo diet well as she sells organic paleo food via a store. Because honestly even after deciding to remove the sugar, gluten and dairy from my diet I need help as the rest is a bit hazy and I'm afraid to get lost and go in every direction at once (especially because of Pinterest hahaha), so I have an appointment with her on​​Thursday, June 29 (I'm very excited).





I also invested in two books:

The Paleo Approach: Reverse Autoimmune Disease, Heal Your Body, by Sarah Ballantyne


The auto immune cookbook by Mickey Trescott


I hope they'll help me see more clearly the path I have to follow and also to have recipes ideas because otherwise it can quickly become a boring diet in addition to being binding one.

it's the beginning of a long journey to better health, and I hope in the end, to remission.

Alexandra

[alexandra]

An Ordinary Saturday, may 24

Today is Saturday , plus a 3-days weekend as Sunday is a holiday.

This morning after the kids homework I decided to prepare a green gazpacho recipe from my neighbor, but I had not taken my mestinon pill.
Being myasthenic means that some days my hands refuse to press the lemon against the juicer , they let go of the knife while I cut the onion , or my arm refuses to move to put the ingredients in the blender .

But I take my time, I do it anyway, more slowly, with pauses, but I do it, because otherwise it would be me sitting in a corner and waiting for others to do things for me.
People do not understand what is happening in my body, some will act as if I'm totally normal, others will treat me like a fragile object.
I wish they were in my body to understand what words can not explain, the pain that the mind must overcome to keep doing everyday things.

I seem to complain but I am thankful because at the end of it my MG is not as serious as some other people who are in wheelchairs or otherwise unable to control a body that self destroyed.

I am fortunate to have family and friends who supports me even when they do not understand. But after 5 years, I'm tired of fighting to do the small ordinary things of everyday life, that's what gives me the determination to start the AIP protocol , even though I love cheese, bread, chocolate and everything else, not eating remains a small sacrifice if it really works .

I look forward to meeting the nutritionist to establish a battle plan and have a clear idea of ​​what to expect .

Green Gazpacho recipe
4 cucumbers
2 avocados
2 green peppers ( not here because peppers are not allowed in the AIP protocol)
4 onions
4-6 cloves of garlic ( I put 3 and already it stings )
40 mint leaves
2 green lemon
2 lemons
2 tablespoons balsamic vinegar
Olive oil
Salt and pepper

We peeled, press and put all in the blender .

[alexandra]

Happy Mother's Day, May 25

Today is French mother's day, my daughter gave me beautiful home-made cards with lots of I love yous in it and particularly one where she says she loves me more than she's afraid of the dark and let me tell you that's a very big declaration, and she made me two rainbow loom bracelets, one pink for her and one blue for her brother. From my son I had a big cuddle, and I do love those big cuddles, the ones when your whole body relaxes into, such a nice feeling.

And then I got to go shopping by myself while hubby looked after the kids, found some cute outfits to fit my new frame, so I'm a very happy girl indeed.

Alex

[alexandra]

You know you eat Paleo when....May 26

I've been reading the paleo approach by Sarah Ballantyne for a few days now, I go slowly because it is a lot of science to process, and things to remember.
Some stuff I thought were good for me actually aren't , others I avoided are to be included in my diet and/or my life everyday.

This morning after my check up at the gyn (yes I'm making a round with the docs to make sure everything is as good as can be considering I've got MG, tomorrow is neurologist and probably an MRI), I went grocery shopping, because Monday is market day in one of my usual haunts here, which means better prices, so I bought a full load. And you know that you eat Paleo when you purchase:
Organic beef grass fed , organic chicken , pork roast organic organic as well (in the non Muslim section of the shop of course because the UAE is a Muslim country).

Vegetables: kale, carrots, cherries, grapefruit, avocados, cucumber, zucchini, onions, butternut squash, salad .

Oils: avocado oil, Coconut oil and finally the thing that I never thought I would buy one day: lard.

[alexandra]

Earthquake, Neurologist and breakfast May 27

I'll start with the "exciting" bit, today we felt tremors, there was an earthquake in Iran, which is a neighbor country. I didn't feel anything but there was a power shut down at the neurologist office, apparently the whole Jumeira2 area was down for about 45 min, but maybe it's not related, maybe it was just an idiot cutting the wrong cable somewhere.
gulfnews reports on earthquake

As for the neurologist, everything is as good as expected, strong weakness of the eyes for diplopia (double vision) and mild ptosis (dropping eye lid). Mild weakness in the arm and legs, more pronounced in the legs. I also learned that my left pupil is bigger than my right, but considering that a brain tumor has been search for and not found before, the brain tumor theory was discarded 5 years ago, it is of no importance. My thymus was perfectly fine, normal size on my last MRI so no need for another one, yipee.

So I'm left with breakfast, yesterday I bought a butter nut squash so I decided to make butternut porridge and crispy bacon for this morning. I know it's more of a wintery breakfast but we don't have winter here, we have hot, burning and boiling so I figured it would be alright.
I roasted my butternut yesterday afternoon so I wouldn't have to wait this morning. And it was A-MA-ZING, so good and creamy, I put a little cinnamon in too, it was heaven.
For the recipe you can head over to coconutcontentment.com
And browse around, she has some amazing recipes.
And for the bacon I cooked it in the oven because I hate cooking it in a pan, after roasting it I broiled it for a minute because I like it crumbly crispy.
Here's how to cook bacon in the oven:
thekitchn.com

and voilà, the perfect breakfast

[alexandra]

I'm Skinny Fat, May 31

So I didn't write for a couple of days, busy life, busy schedule and family time got in the way, we've eaten some delicious things like paleo burger, and coconut chicken, but the real purpose of this post is to talk about what happened at the nutritionist office. You know, you always imagine how a meeting is going to go and suddenly it doesn't go that way it's really surprising.



Yep you read that right, at 55.5 kg for 1m67 I am what's called skinny fat. I have to much fat in my body2.2kg to be exact, and the last 5 years of cardio two to three time a week did nothing but eat away my muscles, so I need to put on 7 kg of pure muscles starting now.

So no more cardio to be replaced by weight training, I have to put 1 to 2 kg of muscle within the next two weeks. I'm apparently also proteins and minerals deficient, so I need to amp up on the protein, starting by a protein smoothie every morning. And I have to eat a little more carbs, mostly sweet potato.

I'm off the AIP as long as I don't put on the 7kg, and back on regular paleo diet with nuts (more proteins). And I'm supposed to have a snack in the afternoon to help even though I hate snacking (almonds, or olives are what she told me was good to snack on).So far I've trained twice, and today is my off day, I have muscles that I didn't know existed who are sore, I eat a lot of protein and veg, but I've lost more weight instead of gaining some (54.8kg this morning), but we are only on day 3, there is still hope.


The 2.2kg of fat should melt into muscles so no need to worry about it just now, more so because apparently my metabolism works just fine, even with the lack of muscle mass.

[alexandra]

my finger on the trigger, June 10

I’ve tried to ignore it, I’ve tried to deny it but the fact is that chocolate is one of my biggest trigger, I love chocolate, I wish I could survive on chocolate alone, but now for the next few months chocolate is not going to be part of my diet.

The same thing is true for one of my other love, almond butter, it too makes me sick, I reintroduced it as per nutritionist order and OMG lots of symptoms, so I stopped it a week ago and oh my what a difference. But it’s hard, when my kids eat chocolate biscuits, when my hubby eats some a piece of chocolate after diner, I’m craving it, but the way I feel after I eat some  is not worth the 2 minutes gratification I would have, so I don’t eat any.



Other than that I started probiotics, and it made a huge difference in how I feel, so huge that 2 days ago I forgot to take it and I was sick and tired all morning until I realized that I hadn’t take it.

At night after dinner I take vitamin D3 and magnesium, I sleep so much better since I started, It made a huge difference too, no more waking up 2-3 times in the middle of the night for no reason.

I have been weight training every other day, it’s hard but I like it, the only thing is I think it’s a bit too tough on my body, and that’s why I think I still have a lot of symptoms, some of them new ones, like my right hand not being able to close.

I’m caught between having to put on 7KG of muscles (15.43 lbs) and having to take it easy so my body can heal properly. On one side I can’t heal if my muscles are atrophied on the other I can’t heal because the exercises are too strenuous. So I continue this way, My thinking is, the earlier I put on these muscles the earlier I can stop putting my body through the wringer and heal.

My eyes don’t cross as much as they used to, so that’s good, and I take only two mestinons instead of 4 daily. I have nothing else to report really. Just the same old routine, trying to find recipes that I like and can eat too.

[monique]

Alexandra all the best with muscling up!
x
Monique

[alexandra]

Thanks Monique
X
Alex

[alexandra]

Last thursday I went to see the nutritionist, so the reason I haven't really put on weight is that I gained 700gr (1.54 pound) of muscles but lost 500gr (1.10 pound) of fat, I'm not deficient in minerals anymore (well it's just a estimation anyway) but still deficient in protein, she insist that I don't eat enough, I can't eat more, I've never eaten so much in my life, I feel full all the time, I'm not going to make myself sick just for a few more calories. So we continue this way, still 5,9kg (11 pounds) of muscles to gain.

Here's what changed
weight then 55.6 kg
weight now 55.8kg

muscle mass then 21.3kg
MM now 21.7kg

Body fat mass then 16kg
BFM now 15.5kg

Basel Metabolic rate then 1225
BMR now 1240

Muscle to gain then 6.6kg
muscle to gain now 5.9kg

Fat to lose then 2.2kg
Fat to lose now 1.7kg



Other than that I've had my period yesterday and for the first time in years it kind of took me by surprise, no horrible migraine with vomiting for days on end, now huge increase of my myasthenia symptoms. I had the few spots on my face and tender breasts but that's it. I can't believe the difference, before I was next to useless one week before my period, and now I'm fine.

So I'm a happy bee.

[kfurletti]

Hi Alexandra, thank you for sharing your story! I am also living in Dubai with an autoimmune disease. I am having trouble finding a nutritionist or functional medicine doctor that is familiar with paleo and AIP. Any recommendations? Thanks!