What a glorious day it is outside! Pretty gutted I’m not away in the van this weekend when it’s such perfect weather for it! It feels such a long time since I last went on an adventure with Casper. Probably the longest period of time without a trip, since owning him. But that also shows how good my health has been in the last year with the wolf!
This weekend I feel so much better! I feel back to my good old self with the wolf and couldn’t be happier! The days can be very tough both mentally and physically when battling a flare. It always feels like there’s no end to it. But it’s always important to remember, that you will get through it, you will come out the other side, back to how you were pre-flare up. Just like good times always come to an end, so do bad times.
Gut Health
Last week I had a food sensitivity test along with a gut health test. The results were not quite what I hope for. It confirmed my dairy intolerance, which I already knew about, but also brought up a new list of foods I’m sensitive to. This included wheat and corn. To be fair, it shouldn’t be a complete shock to me! Whenever I eat pasta for tea, I do often have a painful, uncomfortable stomach afterwards. When I eat popcorn, my stomach often bloats and feels uncomfortable. The wheat sensitivity is a strange one as I can have gluten, it’s the actual wheat that my body doesn’t like. Other things foods that flagged up were prawns and shrimps, which I don’t eat. Gin, which I don’t drink. Emu, I mean who eats this? Chestnuts, wheatgrass, barley, and vermouth.
I’m pretty upset with my wheat and corn results, as they are 2 main groups of food. It’s bad enough not being able to have dairy! Then there’s also all the other food I don’t eat because there too acidic for my stomach, etc.
The results of my gut health weren’t much better! Which I do believe might also be the contribution to a lot of my food issues. The flora in my stomach is shocking! I was tested for 6 different strains of bacteria in my gut. Only one of them was in range, the other 5 were below. They then did some tests on my digestion, and my results came back low in the 3 main digestive enzymes: Amylase, Lipase, and Pepsin.
Since having my results, I’ve done some research myself on how to improve my gut, and why they might be so bad. Basically, antibiotics and PPIs destroy healthy bacteria in your stomach. Also, PPIs block the digestive enzymes in the wall of your stomach that produces the acid, in aid reduce the acid in your stomach. So this basically reduces the enzymes getting into your stomach to help to digest your fats sugars and proteins.
Having low gut health then can lead to food intolerances. Apparently, you can heal your food intolerances, by healing your gut. But the problem I have, I need my PPIs. I’m on a strong dose of Esomeprazole too. Also if you are severely immunocompromised, you are advised not to take live probiotics, to help your gut flora, as it can cause serious infections in your blood. So basically, I don’t really know what I can do. Is there a way to heal my gut? Mango and pineapple are good for increasing your digestive enzymes, but if my Esomeprazole is stopping them from getting into my stomach, it’s going to make no difference for me.
Gastro Need To Sort It!
I’m due my gastro appointment after my honeymoon, so I’m going to sit down with my gastro consultant and talk about it all. I need it sorted! I really can’t go on living my life like this. My food choices are becoming more and more limiting, often suffer from a bloated, uncomfortable stomach, and my body isn’t absorbing all the nutrients I need. I shouldn’t have to rely on so many supplements, I should be able to get it from the food I eat! But supplements seem to be the doctor’s answer. I take omega 3, calcium, magnesium, B12, iodine, and Vit D (I know nothing to do with food, but still a supplement), and now just found out my Vit B2 and B9 are low, and my iron has gone low again. Not surprised about my iron though! I was on iron tablets but stopped them in November as my stomach was struggling too much with them. So I knew my levels would slowly drop back down again.
It’s so frustrating! I know many of you will be able to relate. You take medication to help one problem, they then cause another problem. So then you get put on something else to treat that problem, which then causes another problem. 10 years after taking all this medication, your body becomes a mess!
So I’m off to America next week, I’m going to have so much fun eating all the lovely, delicious American food! I do miss them days, being able to eat what I want, and enjoying all the local food. A big part of travelling is trying the local dishes, and enjoying the food. My mom has very kindly brought me some special meal, food pouch things, to pack with me. They are for an emergency in case I can’t find any food I can eat when I’m out in the sticks on Route 66. It’s a complete meal in a pouch that doesn’t need to be stored in the fridge. All you have to do is heat it up either in the microwave or on the hob. I don’t know how they taste as I’ve never had one before, but they look ok. Reminds me of backpacking food! To be fair, it probably is!
Medical ID Bracelet
I was reading something the other day about America and hiking out on the trails. They were saying if you suffer a chronic illness, are on important medications, or have serious allergies, you should wear a medical ID bracelet. So I thought I better get myself one ordered. I always do keep my medical ID up to date on my phone, which I would hope pracademic/doctors would look at if I did collapse and became unconscious. I do also carry my blue steroid card around with me too. Anyone on long-term steroids should have one. If you don’t have one, speak to your GP, as it was them who sent me one and told me to carry it on me at all times.
This is my medical ID bracelet, which I ordered off Etsy. It doesn’t have all my conditions on, just the main ones, which are important. On the inside, it does say please refer to medical ID on phone, which has everything on.
My Eyes
For the last couple of days, I’ve struggling to focus with my eyes. I’m a bit concerned my eye muscles have got weaker and may need a stronger prism. Whenever I have a bad flare, always seems to affect my eyes. It’s frustrating! I am due for my eye appointment with the hospital, anytime now. Annoyingly, I’ve only had these glasses since December! I’m hoping it’s just a bad few days with my eyes, and they will just correct themselves. Sometimes, when they are really dry, my eyesight can get affected, so let’s hope it’s just that!
That’s it from me this week. I fly out to America on Saturday for our honeymoon. I will be leaving my Mac at home and having a little break from my blogs. I will be back on the 12th of June, with hopefully lots of great photos to share with you all! I’ve got my routine bloods on Wednesday before I go. Hopefully, all will be ok.
On Tuesday it’s World Lupus Day. To celebrate, my book will be going on sale for £12.95, for the day. If you are interested, here is the link to order your copy. Save the link, and remember to get it ordered on the 10th of May.
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Until next month,
Goodbye for now
Emma
xox
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