Yeah!!!!!!! Feeling so happy, today we had our 11 week scan - all still on track, heart ticking and baby is right size. Results from the syndrome test hadn't come through, but tonight at about 6.45pm our doctor called to tell us that she got them in the afternoon and everything is 'low risk'. Yeah!
Apparently the test is 99/98% accurate, so very happy.
She also told us the sex of the baby, but we're keeping it a secret. Don't want the world to start thinking of it too much as a living human yet... Not until it really is.
So hope this works.
Hi Lisa,
ReplyDeleteI wanted you to know that I've been following your blog and sending positive energy your way. I too have a mutation on the MTHFR gene and its devastating effects have wreaked havoc in my life. I've suffered through 5 (confirmed) miscarriages, each with their own unique challenges. I have no living children. Although I'm not trying to conceive at this point in my life, it brings me immense hope that you've found a combination of interventions that seem promising.
This MTHFR-crap is mind bogglingly difficult, even without trying to conceive. I've only recently undergone comprehensive genetic testing and I am in the process of interpreting the results myself. It's nice to have more information, or some explanation for why I "react" to certain things, or "feel" certain ways. At the same time, it means I have a lot of work ahead of me. Eliminating toxins and restricting my diet is more difficult than I ever imagined! Reading your posts helps me feel like I'm not alone in this process.
I truly hope you'll continue to post throughout your pregnancy and journey with MTHFR. It has been my experience that there are few healthcare providers who are educated about this. I get it. It takes time and dedication to follow the research. I think that's why blogs like yours are so important. There are many individuals out there desperately seeking answers, scouring the research and trying different combinations of supplements and diets, all in hopes of conceiving a healthy child, battling depression or simply feeling like they have the energy to get out of bed.
Personally, I think some of the best things we can do to support one another are to write about our experiences, share our stories, commiserate and empower one another in this process of self-discovery and journey to wellness. Although I'm not a huge fan of Internet technology, I think it can be a powerful tool to connect with others - in some kind of massive support network.
Thank you for your posts. Wishing you and your family health and happiness.
Erin
Oh Erin, what a lovely message. Thank you. Thrilled to hear there's someone who can feel supported by our experience. I'm so sorry you've been going through what I have. Boy, hearing it from others makes me want to burst into tears. It's a hard road. Hope you and your relationship are ok. Lots of love and positive vibes to you.
ReplyDeleteThe lack of knowledge and information out there is what made me decide to write. It's been such a long way to discovering something so simple. Frustrating to think, that if we'd been given the correct information all those years ago, we'd probably have a full family by now, and our lives would be so different.
I'm staggered at how little focus and respect doctors give to nutrition/DNA/correct vitamin intake. It's strange. Sure it's to do with training, and maybe drug companies. But from now on, I'll be paying just as much respect to naturopaths, their field is equally important.
I found there were so many times in our journey where I felt like falling in a heap, allowing depression to come in, and giving up. But I HATE feeling depressed, it's awful. So I'd fight it, and stay focused on the end goal (having a family). I think I developed all sorts of mental strategies, like, not thinking of the pregnancy as a child, more a medical condition. When I had to have operations and medical procedures I'd tell myself I was lucky not to have cancer. I'd never think of my miscarriages as a loss, just think I haven't gained. And there was always adoption to fall back onto.
Hmm, maybe I should write a section on coping strategies, that's an idea. Maybe that might help someone.
Anyway Erin, thank you for your message. Please feel free to contact me when ever you like, am happy to help in anyway I can.
Really hope things work out for you.
Xxx
Hi Lisa!
ReplyDeleteThanks for your sweet reply and all the love and positive vibes! It helps so much!
Fist off, I would love to read anything you wrote about coping strategies. Seriously. I know how damaging stress can be on my body and I'm always looking for new ways to chillax, or different perspectives that help me view my own struggles in a new light. I know other people reading this blog would benefit too. :)
Also, if the mood strikes you, I would love to hear more about the kinds of meals your preparing and eating. What does a typical day look like? I know you mentioned you’re eating a ton of dark leafy greens and eating all organic. Do you have any recipes to share or meal plans?
I am really struggling with changing my diet. I get why the government started putting synthetic folic acid into literally everything, but gaaaah it's frustrating! I've noticed when I eat anything with folic acid, my skin shows it three days later. I developed a severe rash on my face 4 years ago and apparently, it's related to this MTHFR gene mutation. My body has really been through the ringer, and I've done most of it to myself. Unwittingly of course!
Anyway, I don't eat a ton of baked goods, but I do like a nice loaf of bread. But NOPE. Full of folic acid. So I found organic flour that hasn't been enriched and now I make my own bread, muffins, and pizza dough. This requires time and forethought, things I'm not accustomed to implementing into my process of procuring and consuming food.
Rice. Had to find special rice that wasn't enriched. And forget the orange juice! I have yet to find an organic brand that isn't loaded with synthetic b-vitamins and I haven't tried squeezing it myself. It's a bummer, because apparently an ice-cold glass of OJ is just the thing for managing stress and cortisol.
I am totally not used to my pantry harboring potentially poisonous things!
It sounds like a blessing that you’ve found a naturopath who is knowledgeable about MTHFR. It’s gotta help to have someone in your corner, especially someone who can order and interpret tests! I swear if I had the right equipment, I would have tested myself years ago. Sometimes my brain wants to think about how things might have been different, if only I had known… but then a part of me steps in and says, "hey, cut that out. You know now and that’s what’s important." I know I can’t change my past, but I can definitely change how I view my past, or how often I allow myself to revisit it all.
I hear you – about staying focused on the goal and hating depression – I have a similar mindset. I’ve always been goal oriented and a problem solver. It blew my mind when I was basically run over by a truck last year – I mean that metaphorically of course. I was hit with a soul-crushing amount of anxiety, paranoia, depression, PTSD, insomnia and grief. Oh the grief. It was the first time in my life that I couldn’t control my emotions… if that makes sense? The first time I couldn’t push my feelings aside and focus on the future I wanted to create. It scared me. And I think it was all compounded by toxic overload, including several large injections of Methotrexate. At that time, I still didn’t know about my MTHFR mutation and my body’s inability to effectively process and excrete certain toxins. What a mess.
Anyway, I’ve rambled on here. But I have to say, it’s nice talking with someone who shares similar genes and similar life experiences. :)
Keep posting and I’ll keep reading!!
Erin
Erin, you poor thing. Gosh I sympathize so much.
ReplyDeleteI wrote a massive reply to you (one finger tying on an iPad) and then the browser refreshed and I lost everything! Boo hoo. Never mind.
I feel so lucky we live in the time we do, 10 years ago they wouldn't have known about MTHFR to have told us. So while it would have been nice to know earlier, we now do know! It's life changing for both you and I, that's a wonderful thing and we really are lucky.
It's an annoying thing to have to deal with, I've just been to the supermarket and there's virtually NO organic food. I look around at everyone buying crap off the shelves, and wonder how many of them have MTHFR. Then I think to my self, I'm in the first wave of enlightened people, and it will just be a matter of time before the majority cotton on.
It's probably a good time to be starting up in the business of organic food.
In terms of recipes and things, I'm a really bad person to ask, as firstly I'm not what you'd call a 'foodie', but secondly, for the majority of the time I've been on this organic buzz I've been pregnant, with no appetite. I've been eating like a mouse, and eating strange things.
One thing I can recommend however, is making your own breakfast cereal. It's SO simple, SO healthy, and covers lots of annoying foods that are good for you, but aren't usually part of your daily routine - like nuts and seeds. What I do is buy one of those bags of puff millet or rice, then add dried fruit, seeds, nuts, coconut, what ever else you think is good. I don't roast or sweeten it, just leave it plain, so it's super simple to mix together. I then put organic coconut yoghurt on it, and have it with hazelnut milk. It's delicious, and you'd never pick it's not dairy. I have it every morning with all my vitamins.
Is it common knowledge that dairy and gluten isn't good for MTHFR? That's what my naturopath told me. Shame, cause I love dairy, and it's one of the few things my body is tolerant of... But I'm trying to be dairy free. (I'm not gluten tolerant).
In terms of coping strategies, I'm in process of writing, so I'll post in next week or so.
Am so happy you're finding value in this blog. Thank you for writing to me. :-)
Lisa,
ReplyDeleteCongrats on your 12-week scan! That is wonderful, wonderful news! :)
Oh no! I'm so sorry to hear that all your work was deleted! AHH, I've had that happen before in the browser. I usually type my emails or messages in Microsoft Word and then paste them in. I've just been burnt way too many times by that and it's a terrible feeling. When you start rewriting it all, it's frustrating because inevitably you said it better in your first draft! haha
I love your breakfast cereal idea! It sounds delicious. I've never tried coconut yoghurt, but I love coconut milk.
Truthfully, I had no idea so many people with MTHFR are also intolerant to gluten and dairy. I still have not determined how sensitive I am to either one of those. I really need to. I don't consume a ton of dairy, but I do love cheese and yoghurt, which I eat several times a week. With the delay in reaction, it would be difficult for me to tell if eating yoghurt caused me to feel terrible two or three days later. I really should go on a basic diet and start determining which foods I'm reacting to, however the task seems to incredibly daunting! It would be super nice to live and just feel good without having to work so hard for it!!
Today I'm headed to a local farm with my guy. His mom is on vacation and we're picking up her farmshare for the next two weeks! Free veggies is gonna be awesome! Especially after our trip to the grocery store yesterday. When you're loading your cart up with organic produce, the bill is at least 50% higher. It's terrible! You said something in an early post that stuck with me. I can't remember how you put it, but you said that eating organic was so expensive that you'd just have to get used to eating less. You're totally right.
Oh and you're right, so many people have this gene mutation and don't know about it. It's like having diabetes and ignoring it - that would cause irreparable harm. I'm not sure what you're family situation is like, but did any of your family members get tested for MTHFR after you found out you had the mutation? My family has yet to do so, but it explains some of the health conditions I see in my parents and grandparents.
Well, I hope you're having a wonderful day!
Erin
Yes, my entire family is homozygous for MTHFR. I'm not sure what types, but they've had the blood tests and all positive. Now they're taking 5-methylfolate and it's making them feel fantastic. Especially my mum, it's fixed her pomfloxra (hand condition).
ReplyDeleteYeah, the food thing is a drag. My wonderful naturopath said to try and be organic 80% of the time. She said not to worry about eating the occasional white bread sandwich or delicious piece of cake, but if you make the majority of your diet good then that's what we need. She actually said, despite being intolerant, we need the occasional bit of gluten and dairy.
Note: my DNA says I am intolerant of gluten, not intolerant of dairy - but dairy free is good for MTHFR (or restricted dairy). Maybe it is different for people with different types of DNA?
Have you had a good naturopath look at your DNA?
You're in America I take it. Apparently America had really good natropaths who need to be as qualified as doctors. Im in New Zealand, the industry here isn't as evolved, and there are a few cowboys about. So you have to be careful who you go to.