Thank you for joining me! For years I have been toying with the idea of starting a blog so what better way to kick off 2019 than to get down to business and set up a blog and write my very first ever blog post! Let me start by introducing myself, I’m a 40 year old woman trying to balance life, full time employment, and autoimmune disease. You may be asking yourself “What is a ‘spoonie’?” Let me give you the quick run down. The founder of the website ButYouDontLookSick.com, Christine Miserandino a Lupus warrior, came up with the spoon theory to explain to her friend what living with chronic fatigue from invisible chronic illness and autoimmune disease was like. She basically explained that a normal person in good health might start the day with 20 spoons, while someone with an invisible illness might only start their day with 10 spoons. It takes more spoons(energy) to do simple tasks like washing our hair or driving to the grocery store or an appointment than someone with good health, therefore depleting our already small energy reserve quicker. Because of the less available energy, we have to chose how we spend our spoons and on what and whom we spend them on! Yesterday for example, I used my spoons on credit which was due today apparently. It’s been a rough one but I’m doing all I can to stay positive and stay busy and destract myself for the rest of my shift until I can make it home and crash out for the night.
So what’s my “why”? Years ago before I had any real diagnosis’s yet, a nutritionist friend suggested I stop eating grains, gluten, dairy, processed foods, sugar, nuts, and mushrooms for a month and do not cheat! I did this for 2 and a half months and all of my symptoms went away. I had chronic fatigue, it was gone! Urgency, nocturia, and constant painful bladder/UTI symptoms, gone! Brain fog, gone! Dizziness, gone! Endometriosis symptoms were not completely gone but significantly improved. My mood was significantly more stable as well and my horrible insomnia that I’ve lived with almost all of my adult life was gone! I had trouble maintaining the diet and fell off the wagon and my symptoms returned.
8 years and 3 autoimmune diagnosis’s later, I still struggle to stay on my diet and let go of other bad habits that hinder my healing and my health….that was up until a few weeks ago anyway. I was finally able to get in with my old rheumatologist and discuss the worsening fatigue and unprompted weight loss and neuropathy. She immediately ordered tests and scheduled a follow up in 3 weeks. Well, one of the tests came back positive for a protein that is apparently only found in patients that’s have Rheumatoid Arthritis or Psoriatic Arthritis (14.3.3 ETA Protein). A friend suggested I not over-react until I see the doctor and she gives me an official diagnosis even though the information from the lab told me what it meant and every medical document says that that specific protein is a marker for RA or PSA and as from what I can see I don’t have psoriasis. The doctor did have the nurse call me and tell me about the test results and said we would discuss it at my upcoming visit. The nurse can’t give me a definitive yes or no of course but the tone of her voice was enough. Anyway, my follow up is next week and I am absolutely terrified. Living with Endometriosis, Hashimotos, and Interstitial Cystitis are already an epic pain in the ars, an inconvenience and sometimes are downright disabling in their own right, and the Sjogrens Syndrome was already scary enough but now Rheumatoid Arthritis too?!?! Most people don’t realize that some of these more common, severe systemic rheumatatic diseases aren’t just body aches, fatigue and sore joints but they come with a high risk of lung disease, increased lymphoma risks, and a whole host of secondary diseases and diagnosis’s. I’m just done with this being sick nonsense! This is too much, too expensive, and too scary! There is no longer room in my life for cheating on my diet or smoking the occasional cigarette or negativity. Most people don’t believe me when I tell them I’ve put myself in remission before through diet alone but I am here to prove them wrong! My closest and oldest friends can attest that I have done it and my health is significantly improved when I am consistent with my diet. I am consistent now but even the gluten free – dairy free pizza I ate last week had enough sugar and yeast to send my body into a flare. So yeah I’m very good about my diet but for me the trick is consistency and staying away from sugars and starches and keeping it as close to AIP(Autoimune Paleo) & Mold & Yeast free as possible. This knowledge came from years of research, labs & tests from functional medicine doctors, and good ol’ trial and error. A friend asked me today how I do it(stick to such a strict diet) and I told her, “It’s my only option. If I eat junk food I’m a constant basket case, have migraines, and I’m too weak to get out of bed.” My life, my friends, my family, my boyfriend, and my stupid cats(I love my cats),
these are all far too important to me to chose food over living! Plus, I have to be able to work to support myself so I have to learn to be well, to be functional. I have too many “why’s” to give up trying! I didn’t choose to have autoimmune disease and food allergies but what I can choose is my response to it! I choose to never stop reaching for remission. I choose to stay positive. I choose to stay hopeful and to never stop learning!
I think of how many people there are like me living with autoimmune disease trying to work, trying to be a mom or a dad, a friend, a sibling, a girlfriend/boyfriend, or wife or husband whatever!!! This is no way to live and I want to do all I can to help teach and encourage others that there are options! Remission isn’t and doesn’t have to be a fantasy. I’ve done it before and I’ll do it again. I’m going to do all I can to avoid chemo and immunosuppressant drugs! Yes I know one day I might have to take strong medications if the RA and sjogrens get dangerous but I’m going to do everything in my power to heal and not let it progress that far. I invite you on my journey and we can learn to heal, learn to stay positive, learn to take care of our bodies. I’ve been doing the paleo thing off and on for about 10 years. I’ve learned alot of tricks to save time and money in the kitchen since getting sick has cut my income and energy in half. I have so much knowledge, its shameful for me to keep it all to myself so I will be sharing recipes and time and energy saving tips as much as I can. I’m not turning back this year until I reach remission and it would be amazing if I could bring others with me on my journey and they could find remission as well. I know it’s not an easy feat but if enough people encourage each other and give testimony that remission is reality, it seems that much more achievable for others that are struggling and looking for hope! I’ll get through this and so will you. Thank you for reading!