So many of you have asked about my Utah trip and it's been incredibly difficult to truly express how amazing and informative that trip actually was. This will be a long and thorough post, but I hope it sheds light on autoimmune disorders and how absolutely empowering it can be to learn how to be healthy and care for yourself in the ways you need.
As many of you know, I suffer from Lupus and am bordering Rheumatoid Arthritis. My official diagnosis is Undifferentiated Connective Tissue Disorder/ Lupus. I also have a blood disorder, which as of now, is being considered as Antiphospholipid Antibody Syndrome. My options here in Texas through western medicine are, lifelong blood thinner medication and Plaquinil (a drug originally used to treat malaria but has now been known to help with inflammation from autoimmune diseases), long term predisone steroid use, and chemotherapy. These options have been so daunting, and as I have researched support groups for others using these methods, it's all very negative and sad with very little hope. They are filled with people taking drugs to mask their symptoms and taking more drugs for the side effects. They are miserable and just prolonging the inevitable of when things get dramatically worse and organs shut down completely.
While in Utah, I explored a naturopathic/holistic treatment plan instead. I went in with an open mind, but also very skeptical. My first visit was with an EDST who uses the German Meridian Stress Assessment Testing to test all my allergies/sensitives, my hormones, and gave an overall picture of my body's function. Within minutes, he knew things about me, my surgical past, and my already known allergies without me actually disclosing anything. The machines did all the talking and honestly, I became a believer. At one point along the way, I broke down in tears, looked him in the eyes and asked, "How often will I need to fly here to make this work for me? I am in this 1,000%.)" We established a 3-4 month time frame with lots of internet communication in between. He gave me natural designed chemical drops that mimic my body's own hormones and teaches it how to create the right amount for me to function. He also taught me that my gluten, dairy, lactose, soy and nut allergies are in my DNA; if you have a sensitivity to those foods, you should always do your best to avoid them. But, my other allergies to things like nightshades and most fruit can be helped with these similar drops. They act like a flu shot in the sense that they desensitize your body from the acids or allergens, and with time, as the inflammation and bacteria dies off and the body heals, your sensitivities can become less prominent and you can bring those foods back into your diet in moderation. For the first time since my diagnosis, I saw a treatment plan filled with hope, happiness and possibility! It was spiritually, emotionally and physically cleansing to feel something so whole-heartedly and know this was the right path for me.
Adjusting my diet is only one piece of this treatment. Changing my makeup, lotions, shampoo, conditioner, face wash, nail polish, toothpaste, floss, toothbrush, deodorant, etc; and getting on the right FDA allergy approved supplements-- That's when things will really start to change. Because, even the smallest amount of corn or gluten from a topical product like makeup and lotion, or the smallest trace from toothpaste, can cause a reaction of inflammation and bacteria inside the body that could take months to heal and go away, even when you make the right changes again. So, I spent over $1,000 the last two days ordering everything I need to really invest myself into this treatment. If I'm going to do this, I'm going in all the way!!
Hopefully once my supplements come, I can really absorb all this incredible food I'm eating, gain some wait and maintain it, and feel amazing!! I am so excited to get all my new stuff! I think I might burst into tears once I know I've received my last package. Actually, who am I kidding? I will probably cry as every new package arrives, haha! Again, for the first time in my 19 month health journey, I have answers, a plan, and a husband who is completely diving into all of this with me. He is literally taking the leap, holding my hand every step of the way, and giving this process his everything by changing his diet and topical products, and even using all-natural cleaning supplies throughout the house for me! He is so encouraging and never wants me to face this alone. I have so much hope and there are no words powerful enough to describe that kind of freedom.
I personally, cannot have gluten, dairy, lactose, corn, soy, nightshades, most fruit, sugars, or nuts (except for raw, unsalted cashews). I cook everything in the healthy fat oils like, organic avocado oil, olive oil and coconut oil. It's definitely going to be a huge lifestyle change, but I think it's going to be really good for me!! I'm going on a personalized auto-immune-type paleo diet and also incorporating things from lowfodmap. Because of my sensitivities, things get tricky and more personalized. No one diet will be right for me. So, we combine and adjust as needed. We found out I'm really allergic to the acid in almost every fruit and all the nightshades. (Which are basically tomatoes, garlic, pepper, any type of peppers, cumin, paprika, onions, potato skins (but, I actually can't eat white potatoes at all), and even oregano!) I have to get a little creative with seasoning food, but it's actually going really well so far!! So, that I am thankful for. I even have to special order tuna fish because I can't eat anything sold in the stores. I can't have any kind of salt except 100% pure sea salt. Sooo crazy, right?! Who knew all that food and all my topical products were poising my body and making me so sick. It blows my mind.
Everything I eat, touch, and use is gluten free, soy free, corn free, dairy free, lactose free, sugar free, and nut free. And, EVERYTHING IS ORGANIC, ALL NATURAL, 100% PURE. I will not be able to eat anything processed ever again. But, I feel like I have so many options still and the food is seriously amazing!!! I cannot reiterate enough just how excited I am to have everything here. Throw out the old and celebrate the new!!!
For now, I wear gloves when making the kid's food but at some point very soon, I hope to switch them over to as much paleo as possible! Obviously, they'll have many more options than I currently do, so I hope they have just as much fun with the new changes as I am! I make everything from scratch and again, I only buy organic, 100% pure, all natural EVERYTHING!!! I know it seems a tad intense! But, when you've been as sick as I have been, no measure seems too extreme. It will be worth it to feel better, this I know!
I am also working on establishing a mild workout routine! Walking two days a week for 20 minutes. (The goal is to reach a mile each day.) And, yoga/pilates for 15 minutes, three days a week. Seems simple enough, right?! For an athlete like I used to be, I could have done that without any problem. I mean, I trained for hours and hours every single day! But now, with my lupus in full flare-up mode, just standing for long periods of time to do my hair, my makeup, even getting the kids ready, I am completely exhausted. Sometimes, I use all the energy I have in a day getting us ready that by the time we get to where we are going, I have to sit in the car or miss out altogether. We have a lot of lazy, pajama days at home these days. So, when I can do this workout routine and still have energy for the day, I'll know I'm doing pretty darn good!
On a more serious note...
My friend, Heidi, is an absolute blessing to my world in all of this. I will not ever be able to thank her enough for all she's done; especially for saving my life. And I mean that in a very literal way. She has actually saved my life by providing everything I need to make this drastic lifestyle change. She has laid the groundwork for me so I don't feel very overwhelmed at all. Through her own twelve years of suffering, through much trial and error, and with some spiritual inspiration, she has provided the research material, information, and essentially created a step-by-step process to making this transition for people just like us with autoimmune disorders. She is embarking on year thirteen with Mixed Connective Tissue Disorder. FIVE autoimmune diseases combined! Yikes! Lupus, is one of her diseases and she has truly given every aspect of herself mind, body and soul, into this all-natural way of living and is now teaching me how to live it as well. And, I am happy to report that after almost a full year of living this lifestyle, she is approaching a state of remission. She has a few months to go and some hormones to get balanced, but she's almost there and I couldn't be happier for her!!! If this can work for her, how can I not have hope of the same treatment working for me!? The coolest part in my week long Utah stay, was walking into my doctor appointments with Heidi, explaining my 2200 pages of medical history, my options for treatment here in Texas, and then discussing the plan Heidi laid out for me. Every little detail she was teaching me, was being confirmed and readdressed by these amazing practicing MD's who simply think outside the box and find more natural ways to deal with very real and very scary illnesses. Severe illnesses like my lupus, that other doctors want to treat with invasive medications and chemotherapy! With her help, and the help of our doctors to safely guide this treatment plan, I have real hope for my future and I get to be in control instead of letting these diseases and medications take control of me! She is teaching me to be my own advocate and I am really learning how to navigate this on my own. I hope one day I can be as impressive as she is and maybe even teach her a thing or two! Haha!!
Everything is going amazingly so far! I even changed lotions and soaps for the kids so I don't risk touching them or washing them and getting sick from the minor absorption of those topical products. I am so hopeful!! I started eating paleo with Heidi in Utah for my last two days there because I had a really bad attack Tuesday night after I went out to eat. I started throwing up at her parent's house and sweating through my clothes. She was like, "Nope! You're eating here the rest of the trip!" Haha! Not only is she impressively smart, but she is so very sweet. She even packed me snacks for my flight home! Because of that, I haven't had the episodes of vomiting and diarrhea for six days now and I don't get the intense stomach pains, the rash, or the hot flashes and chills after I eat.
Seriously, it's been the best six days ever! My friend Sara keeps teasing me that we need to have a poop party to celebrate!!! Haha, the things you celebrate when you're a sick person.wnk emoticon That was probably way too much info. But, whatever. Why not just lay it all out there, ya know?!
Some of this might be tmi, but I figure if I'm going to share my story, I'm going with full disclosure! I want people to have an understanding of my lupus, to understand that it's a huge lifestyle change to live completely healthy in every sense of the word, but it's also totally possible! I still get some anxiety every time I eat food and often catch myself mentally preparing for that full-fledged internal attack. But, even with the anxiety, I am actually excited to eat food again and since the pains don't come now, after 30 minutes or so, I have a huge mental celebration and my body finally relaxes.
My goal is to document this journey; my progresses and my hard days. I hope I can reach out to others, like me, who are suffering or have thought about making this transition, but aren't sure how. I have found so much gratitude in my diagnosis's because they have given me such a greater love for others and life in general. They have given me understanding and have taught me that everyone is fighting a battle we might not be able to physically see. I feel that whatever kindness and love my heart held before, has been amplified to the fullest capacity now. I want to shed light on a naturopathic/ holistic treatment plan and change of lifestyle that I fully believe in with every fiber of my being by providing links, recipes, and any other related information. But also, for my own sake. I want to remember all that I am overcoming and doing for myself! Because I am a fighter! I want a constant reminder of the warrior-like strength it takes to overcome lifelong diagnosis's and trials we never expected. I truly believe the paleo diet can help everyone, not just those with sickness; and I hope I can be a small stepping stone for anyone looking to go down that path.
I just want to say thank you once again, for the love and support and for continually praying for our family. It means the world to us and we love you all!
-Ali
Wow, Alicia! God bless you and your family in this journey. Are you on Pinterest? One of my former students, Annette Reichert King...I've notice she had lots of pins on a Paleo board. You should check it out. My health stinks, too! Kidney stones, diabetes, neuropathy. On my bday last week, I was diagnosed with bone spurs and a partially torn Achilles' tendon...on my good foot! Had an MRI, and was told for now, to stay in the boot. I have a boot on right foot to help balance. That was the foot that had a dozen broken bones, and the reason I was able to retire 2 years ago. So, I'm pretty much home bound. Sad to miss my daily swimming, weekly temple trips, and enjoying life. I might be able to go to some Jazz games, with Mrs Iverson's help. It's sure amazing what we have to go through in these tests in our lives.
ReplyDeleteI'll keep you in my prayers...but check out Pinterest!
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