Featured Expert - Juggling Life with Autoimmune Disease
If you haven't heard the story of why Roses and Azalea is started, here's a really quick version. I struggled with autoimmune disease, hypothyroidism, and other illnesses for more than a decade and was finally diagnosed after hearing Dr. Amy Myers on a podcast randomly one day. My husband was the one to catch that episode and thought told me that many of my symptoms matched the ones discussed on the podcast.
The diagnosis took a long time. After persistence, our own personal research, seeing doctors across three different states, and being our own advocates, we finally had the diagnosis in 2018. Although there was some relief in knowing that "it wasn't actually all in my head" like some of the healthcare professionals had told me since my early 20's (in fact, a doctor had told me that because I'm a woman who is getting old, what else should I expect), I wondered "now what?"
Some of you reading this may be wondering exactly that. You've already been diagnosed with autoimmune disease(s) and have had very little guidance and resources. Some of you may not have reached diagnosis yet and want some answers. Wherever in your health journey, I want to reassure you that you aren't alone and that there ARE some resources and support out there for you!
Today, I am interviewing Anessa Powell who is very familiar with living with an autoimmune disease, Addison's Disease. She is an amazing wife and mother of two. Anessa is a passionate speaker and educator as well as one of the leaders of Autoimmune Sisters, the #1 online community for those living with an autoimmune disease. In this interview, you'll find out a little more about Anessa's own health journey, some advice she has for being a modern woman juggling life with autoimmune disease, advice for caretakers, and some of the much-needed resources for those living with autoimmune disease(s).
Hi Anessa! Thank you for taking the time to speak with us about navigating modern day life as a mom with autoimmune disease. Can you start by giving us a backstory of who you are?
Thanks so much, Jenny! I am so honored to be here. First and foremost I am a wife to my husband, Bill, of almost 17 years. We have two amazing children, Annalyse (14) and Will (11). And, I also happen to be a person that has a rare invisible disease.
In 2013, after many years of suffering with random symptoms that included major fatigue, severe stomach pains, hyper-pigmentation of my skin and gums, and taking months for me to heal from something as simple as the common cold, I was finally diagnosed with a rare Autoimmune Disease called Addison's Disease, also known as Primary Adrenal Insufficiency. Addison's Disease is when your Adrenal Glands have shut down and are no longer working. They sit on top of the kidneys and most people don't know how important these glands are to the everyday functioning of our bodies. The Adrenal Glands produce two hormones, Cortisol and Aldosterone. Cortisol is a major function of our body that regulates blood pressure, blood sugar, heart muscle tone, gives you the "flight or fight". With Aldosterone, it also regulates blood pressure and fluid retention. In order to live, I take Hydrocortisone Steroid pills to mimic the cortisol production, and Fludrocortisone to help retain the fluid/salt in my body. If I don't take these medicines daily, I will get sick very quickly.
It is a constant roller coaster ride living with this precarious disease. We do not have a device to monitor our cortisol/electrolyte balance (like diabetic patients and a blood sugar monitor), so we have to rely on ourselves to know our bodies. This can be a tricky thing when first diagnosed. Many Addison's patients find themselves in the hospital pretty fast if they start to get sick and it's not managed from the beginning. It can be a very scary and harsh reality for some, especially if you are a person that has been healthy most of your life.
So much of this is why I began sharing my story. In 2016, I started Addison's Disease with God's Grace on Instagram and Facebook. Over the past few years, it has evolved into a speaking business now called Anessa Powell, Speaker. My new passion is Disability Awareness, especially for the invisible disability community. I think most people are shocked when they first meet me that I am someone that lives with a rare disease, and it is so important that people are aware "But You Don't Look Sick" is a real everyday adventure for many people.
I think many people out there, especially women, needed to hear your story since they may be going through similar experiences and to know that they aren't alone. For those readers who aren't familiar, what are autoimmune diseases and how do they impact our bodies?
The autoimmune definition is stated that it is a condition in which the body’s immune system mistakes its own healthy tissues as foreign and attacks them. Most autoimmune diseases cause inflammation that can affect many parts of the body. The parts of the body affected depend on which autoimmune disease a person has. Common signs and symptoms include fatigue, fever, muscle aches, joint pain and swelling, skin problems, abdominal pain, digestion problems, and swollen glands. The symptoms often come and go and can be mild or severe, which is why it takes an average of three years for someone to be diagnosed with an autoimmune disease.
For me, my body decided to attack my thyroid first which cased Hashimoto's. Then a few years later, it attacked my adrenal glands, thus my Addison's Disease.
As women, we wear so many hats now. With fatigue in particular, a lot of women feel so bad when they are tired and that they have to apologize for it. As a mom and wife, what are some ways to deal with this?
It can definitely be a struggle for mom's as the mom guilt is real. I have definitely learned a lot since my diagnosis 7 years ago on what that means to be a mom who wants to do it all, but physically can't. The biggest thing is to take care of my self every single day. There is a reason when you fly on an airplane they say to put your mask on first and then help your children with theirs. We know in my household if Mom goes down, the whole house goes down. So, I make sure to put my mask on everyday.
What are some good ways to navigate through a busy schedule with autoimmune disease?
First and foremost it is learning your priorities and your limitations. The Spoon Theory is a great example of this. Definitely google it to learn more as it is the battle cry for us autoimmune warriors or "spoonies".
The crux of it is we have so many spoons per day to use. Something as simple as showering can use up two spoons. If you only have 6 spoons per day, you can see how fast you can use them up. It's a fantastic way of showing how our energy levels are finite, and we have to be on top of prioritizing them each day. For me, when planning out my schedule, priority #1 is making sure I have the "spoons" for my kids activities/events, along with my speaking/advocacy schedule. If I know I'm going to have a few busy days in a row, then I'll need to schedule down time for the next few days to allow my body to recover and store up spoons.
Motherhood is hard yet rewarding. For those who are struggling with autoimmune diseases, it can be even more difficult. Can you give some good household and life practices for women living with autoimmune diseases?
Taking care of yourself is priority #1, and planning is 2nd. Taking care of yourself can be as simple as going to bed before 10 pm every night, or as extensive as giving up gluten as it is a major contributor to autoimmune flares. Secondly, planning your days to make sure you have the energy to do all the family is asking of you. Sunday is my day where I sit down and look at the upcoming week to plan out my "spoons".
Also, my kids are a little older now but they are well versed with my condition and know mom gets tired. Having them be a part of the conversation really helps with understanding.
Some of our readers may have just been diagnosed with autoimmune disease. What now for them?
First, be grateful you have an answer! As previously mentioned, most diagnoses take three years. I have even met someone who took 9 years to get a true diagnosis!! So, having an answer is definitely something to be grateful for.
Secondly, research, research, research. Read everything you can possibly find our your condition. Search under hashtags on Instagram, and look for groups on Facebook. You might be surprised how many groups are out there for your to gleam information from.
Lastly, once you've done your research, be your own advocate. Only you know what is going on with your body and how you feel. If you feel that something is off, listen to that voice, and advocate for answers.
So one of the best resources I have found is Autoimmune Sisters. Can you talk a little bit about this group?
I began working with Autoimmune Sisters, an online community for women living with Autoimmune Diseases, in 2019. The founder, Aimee, wanted to create a place for women to share their autoimmune experiences so they don't feel alone. In just one year, it has grown from just Instagram, to a dedicated website with an online community (we call it the Tribe). We have every autoimmune disease listed on the site, and I have the pleasure of being the Disease Director where I get to share stories of various women living with their diseases. It has been so exciting watching Autoimmune Sisters grow. Our goal is to continue spreading the word so that no one feels alone in their daily battle.
Many of us may experience both relief for getting diagnosed and also overwhelmed and lost from the diagnosis. What are some ways of renewing our spirits when we're feeling defeated in so many aspects of our life?
I find that being thankful you have answers is so beneficial. An attitude of gratitude goes a long way.
Secondly, you have to grieve. Not the normal grief you immediately think of that comes from losing a loved one, but the grief that comes from grieving your old healthy life.
The first thing I say to people, when they’ve just been diagnosed with an invisible illness or rare disease, is to go talk with a therapist or counselor right away. They always look at me like I have two heads and I’m out of my mind (probably what you are thinking now!). Like why in the world would I suggest talking with a professional and not their new specialty doctor?
The reason is if you don’t grieve your old life and face the reality of your new one, it could be a long and bitter road for you. You will lose close relationships and your family will in turn be bitter with you. Who wants to be around someone who is always so mad at life?
Coming to terms with the harsh reality can be a painful one. You have to dip deep, muster the strength to fight for your new life. Life is so beautiful and worth fighting for, regardless of the limitations! Once you come to terms with it, you’ll be able to see the beauty everywhere, too.
This does take time, and it will not happen overnight. It will require some extra spoons. Be patient with yourself.
Any advice or tips for the caretakers - spouses, family members, friends?
Be patient with your loved one, especially if they are newly diagnosed. It can take time to find your new normal. Also, do your research, too. It means the world to patients knowing their loved ones understand their daily struggle and truly get it when they say they are "low on spoons".
One last thing, congratulations on attending Rare Disease Week on Capitol Hill and representing North Carolina! Tell us more.
Thank you! It was such an honor to represent North Carolina on the Hill during Rare Disease Week. There were over 600 advocates present from all over the country asking their Congress men and women to recognize the rare disease community in various fashions. My goal was to bring awareness to the autoimmune community as well, since my rare disease falls under the autoimmune umbrella. I conveyed in each meeting that we are on cusp of a public health crisis with autoimmune diseases in this country, and to be aware that without a doubt more medical coverage is going to be needed for this community. I do know our voices were heard as the Personalized Medicine Caucus was formed during the week in part due to our large numbers! I learned so much and really hope to be able to attend again next year.
Thank you so much for answering my questions! Before we part, where can people find you and learn more about the great work you are doing?
People can find me on my favorite social media outlet, Instagram @_anessapowell_ or through my website, www.anessapowell.com
My passion is speaking to various groups, businesses, and organizations on disability awareness and how disabilities don't always come in the form you are expecting. Education is key, especially for staff and employees. I would love the opportunity to bring about awareness at your next meeting. I also love speaking to women's groups on why we need a Tribe. Community is so important in this day and time!
Well you know I'm going to have to ask this. What is your favorite Roses and Azalea product that you've personally tried and how has it helped you?
The Dry, Cracked Skin Balm is something I rave about to all my friends. I am constantly washing my hands and it has made such a difference in my poor dry hands this winter . My 2nd love is the Dry Shampoo. I have such thin hair and washing it daily really dries it out, so using the Dry Shampoo gets me through the in between days beautifully!
If you have any questions or concerns on this topic, please feel free to reach out to one of us! Anessa is also an amazing speaker, so if you have any health events or corporate wellness events coming up, make sure you get in touch with her.
I know things can get tough, especially if you're not feeling optimal or if you're not getting all the answers that you need to feel better. Hang in there! You're not alone, and you'll get there. In the meantime, holistic approaches may help alleviate some of the less acute symptoms - acupuncture, chiropractic treatments, Ayurvedic treatments like panchakarma, massage, cupping, and more.
Wherever you are in your health journey, I really hope that you're one step closer to more healing and more answers. Positive vibes and well wishes, always❣
Since being diagnosed in 2013 with Addison’s Disease, a rare auto-immune condition, Anessa Powell has been dedicated to raising awareness. Coupled with her passion for the Lord, Anessa began sharing her experiences in 2016 and launched her social media outreach through the former pages of Addison’s Disease with God’s Grace. In 2019, her speaking ministry was launched and anessapowell.com was formed. Anessa is known for the energy she brings when speaking to women’s groups about fostering community over competition, and her compassion in speaking to those living with a disability. In 2019, Anessa had the utmost honor of being a founding member of Autoimmune Sisters, the #1 online community for those living with an autoimmune disease. She assumed the role of Autoimmune Disease Director in 2020.