Hi everyone!
I hope you were able to remain as healthy as possible this past year. I know how difficult it has been for all of us, and I am hopeful that we are all heading towards better days ahead.
It made me very happy to have received so much positive feedback from many of you regarding the very first edition of the Healthy Life Planner. I am so excited to introduce you to the new and improved second edition.
While designing this year’s Healthy Life Planner, I made sure to keep your requests in mind. This new edition has an upgraded layout and additional tools to make it even easier to manage your health.
This new compact 6-month planner allows you to write in the dates. This way you can start using the Healthy Life Planner anytime of the year. There is additional space to keep track of your medical notes throughout the planner. I designed each day to have a larger space to write down each meal, and also added room to log your medicine intake as well as your sleep, which is a significant element of tracking one’s health. Each day now also has space to write down what you are grateful for because I believe that a positive mindset is important for one’s mental health. You will also find additional helpful changes throughout the planner such as more doctor visit logs and layout updates.
I have really enjoyed connecting with so many of you via social media. I have appreciated those who have shared their medical story with me, given me feedback, and just overall getting to know you. I look forward to getting to know even more of you in the years to come, and ideally build a community where we all feel safe opening up about our medical challenges while connecting with others.
Thank you for supporting my small business. I hope that you will love this new Healthy Life Planner, and that it will become a great resource that helps you with your health issues as it has for me.
With gratitude,
Brea Weinstein
@breaw10
@healthylifeplanner
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The Crohn’s & Colitis Foundation (CCF) has always been close to my heart and is a cause that I feel very passionate towards. Crohn’s and Colitis runs in my family. My mom, uncle, grandma, grandpa, cousins, and I have all suffered from IBD. I was diagnosed with Ulcerative Colitis at the young age of 9, and for the last 20 years my family has been actively donating to the Crohn’s & Colitis Foundation. I have known for a while that I also want to help contribute to making a difference and have recently started to take action and get involved.
Like everyone else, when the pandemic started, my lifestyle dramatically changed. Unfortunately due to my chronic illness, I had to take even more precautions then other people in my life. I decided to make lemonade out of lemons and take advantage of my extra time, take a leap of faith, and start my own business creating a planner that I had dreamt about making during one of my worst flare ups a couple years ago. Without hesitation, I went to work. I spent 6 months straight working hard at designing the ultimate planner to help people with chronic illnesses, or struggle with mental health, track how they are feeling every day as well as keep their medical information organized in one spot.
When I first started working on creating the Healthy Life Planner, I immediately knew that I wanted to donate a percentage of what I made to the Crohn’s & Colitis Foundation. I designed this planner with the intention of helping people. I wanted it to not only be a tool that helps people keep track of their health, but also make a difference in other people’s lives with each purchase.
Little did I know, that a whole new world was about to open up to me by discovering all that the Crohn’s & Colitis Foundation have to offer.
In the process of donating to the foundation, I began to gain interest in not only donating, but also getting involved with the Crohn’s & Colitis Foundation. I have discovered that there is a community of people like me who have IBD issues that I can talk to, relate to, and participate with in activities. I signed up for the Spin For Crohn’s & Colitis event that the foundation was putting on. It was hosted by YouTube star Rebecca Zamolo and I had so much fun participating.
Also, in early December I joined a virtual meet up with other young professionals who live in the LA area and are coping with the same medical challenges. I was able to hear some incredible stories shared by other people about how they have brought awareness to IBD through their careers.
Cory Greenberg and Derek Mari are two of the incredible people that I met.
Cory is a professional cyclist who has Ulcerative Colitis. In the meet up he shared his story about what it is like being an athlete living with IBD. Cory is a huge advocate for the Crohn’s & Colitis Foundation and has made it part of his mission to bring awareness to his condition. One way he did this was by creating an event where people from all over the world could come together and ride their bikes virtually through an app called Zwift. Through this, Cory was able to build a community that supports IBD and creates awareness while sharing a common interest of riding bikes. For this virtual event, he partnered with Zwift, the Crohn’s & Colitis Foundation, and Zoca who made a special set of cycling jersey and shorts that say Crohn’s & Colitis Foundation on it. These collaborative uniforms were available for purchase to wear during the virtual event. When I first learned about this, I thought it was a fabulous idea because it is incredibly rare seeing IBD having any correlation with athletes. I find this really inspiring because it helps make a statement that just because you have a health problem such as Colitis or Crohn’s, doesn’t mean you can’t be an athlete. It proves that everyone can persevere.
Derek is a writer and director located in Los Angeles. He is known for his sketch comedy, improv, and screenplays. He has been a finalist in the Black List’s Michael Collyer Memorial Fellowship, and a semifinalist in the Sundance Institute’s Development Track Program 2020. During the Crohn’s & Colitis youth professionals meet up in the beginning of the month, Derek shared one of his short films called Crohnie with the group. It was about a young male adult living with Crohn’s and facing multiple stressful things in his life. I think it is important for IBD to be shown in media and film especially since it is not common. In the movies I often see story lines about people with cancer or mental health issues. I can honestly say I can’t think of one film or show with a story line or conversation about an invisible illness such as colitis or Crohn’s. I appreciate the fact that Derek is helping represent us and give people with our condition a voice.
Cory and Derek were both gracious enough to discuss more about their involvement with the Crohn’s & Colitis Foundation and answer the following questions regarding the importance of the CCF:
Brea: When and how did you get involved with the Crohn’s & Colitis Foundation?
Cory: I got involved with the Crohn's and Colitis Foundation in 2015, where I spoke at events as well as online social media engagements. In 2019/2020 I ramped up my support and have been working hand in hand with the foundation to use my professional sports career to bring my awareness to IBD.
Derek: The Crohn's and Colitis Foundation was an incredible resource for me when I was first diagnosed. I learned a lot about my illness just by reading their website and other patients' testimonials. When I embarked on producing the feature-length version of Crohnie, I knew I wanted their support as soon as possible. They have been an invaluable resource for us during the development of this film, and I look forward to building those relationships.
Brea: What do you enjoy most about the events that the Crohn's & Colitis Foundation put on?
Cory: I enjoy the events as a way to reach out to others in the IBD community, as well as patient caregivers. Our recent event on Zwift was so much fun, and I’d have to say my favorite thing about it was seeing the reaction of new IBD patients realize there is so many people in our community for them to find a common bond with. The messages of folks saying they thought they were alone and now have others like themselves to get to know, it gives them hope.
Derek: With the events that the Crohn's and Colitis Foundation put on, there is such freedom of expression for all of us knowing that our experiences are shared and understood. I enjoy attending these meetings/galas/etc. where patients bring levity to the daily struggles of living with one of these diseases. There's a great sense of community.
Brea: How or why would you encourage others to get involved?
Cory: I encourage others to get involved with IBD advocacy/awareness because like myself many years ago, I had no clue what IBD was or what to do when diagnosed. My hope is that the more outward our efforts to make IBD a common discussion, the better our chances for new or existing patients to feel more comfortable coming forward and talking about their conditions, ultimately seeking the help and resources they need to find the right treatment path.
Derek: I would definitely encourage anyone with Crohn's, Colitis, or any invisible illness to attend a CCFA event! The Young Professionals group is a fun place for people ages 18-39 to hang out and talk openly about their illnesses, symptoms, worries, achievements, and progress. It's always comforting to know you're not alone in this battle.
Brea: Thank you Corey and Derek for sharing your inspiring insights.
I completely agree with Corey and Derek that getting involved with the Crohn’s and Colitis Foundation gives one a feeling of community. A community filled with connection, new friends and activities where everyone lifts each other up, and does not judge one another for their frequent bathroom trips or accidents. I am so happy to have found a community of people who can relate to one another about how a medication, like Prednisone, makes us feel, or the annoyance of having to plan our lives around monthly infusions, or having injections every other week.
I have learned that it is important to become an advocate and, like Cory and Derek, to also speak up about my illness. IBD is considered an invisible illness and there are so many people who don’t understand much about it. I am excited to help promote the benefits of the Crohn’s & Colitis Foundation, and help educate others about this illness, which affects millions of people.
One of the ways I am advocating for my illness is by registering for a fundraiser called Take Steps. “Take Steps is more than just a walk. It is a community that brings together patients, caregivers, and friends in a celebration that will leave you feeling empowered and inspired.” - https://www.crohnscolitisfoundation.org/get-involved/fundraising-events/take-steps . This fundraiser is one of the many events put on by the CCF. This year’s event will take place either in person or virtually (TBD) on June 12th. The goal is to come together and support one another whether you are personally coping with IBD or a loved one of someone with IBD. I have started a team called Healthy Life and would be honored to have you join my team to help raise money for the Crohn’s & Colitis Foundation. Go to http://online.crohnscolitisfoundation.org/goto/healthylife to join!
I am looking forward to participating in other Crohn’s & Colitis Foundation activities in person, once the pandemic is over.
I encourage all of you to get involved with me. You can learn more about the Crohn’s & Colitis Foundation at https://www.crohnscolitisfoundation.org
Thank you for reading. If you have any questions, please email me at healthylifeplanner@gmail.com
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After reading Brianna’s story and learning more about Addison’s disease, I applaud her internal power and strength that helps her persevere. As you will read below, Bri mentions how she gets a lot of her strength from her faith in God. Sometimes really all you can do when life gets difficult is to trust in God, the universe, or whatever you believe in. I admire Brianna and I am so confident that her life’s challenges will result in being able to help so many other people get through tough times. Brianna is only 20 years old and has already gone through so much, and continues to live a very challenging life. I truly felt impacted reading her story and I am sure it will leave a mark on you too.
Tell me a bit about yourself:
My name is Brianna. I grew up on a little island called Trinidad. My family are missionaries, so church and ministry has been my life and joy. Outdoors is where I feel at home, and I've always loved activity.
What is the name of your condition?
I have Addison’s disease and Hashimoto's thyroiditis
At what age were you diagnosed, and how did you handle getting the news?
I was diagnosed with Hashimotos at 11 years old. I struggled for 8 years with fatigue and a boatload of other symptoms before getting diagnosed with Addison’s disease at 18 years old. At first I was happy to have a name to my symptoms. Although the treatment helped some symptoms, I soon realized diagnoses were just the beginning of a really hard journey.
Tell us a bit about your condition and how it has affected your life.
Addison’s disease is a rare autoimmune disease usually diagnosed after 90% of your adrenal gland has been damaged by your immune system. The adrenal glands are small bean size glands that sit on top of your kidneys. Adrenal glands are responsible for producing three different hormones:
*Corticosteroids – Deal with physical or emotional stress. Maintain adequate energy supply and blood sugar levels.
*Mineralocorticoids – Regulate salt and water levels.
*Androgens – male sex hormones.
Every day with this disease, you need to be aware of stressors, dehydration, and how you feel. Because cortisol is the stress hormone, any stress – good or bad, must be watched to see if you need more medication. With special attention to any sickness, or big emotional disturbance, they can catch one off guard and send them into an adrenal crisis. An adrenal crisis is life threatening and a very painful way to die. Since cortisol is needed for life and used for many body functions, an inadequate amount will start shutting your body down. If not treated quickly, this will end in a coma and death.
A difficult part of living with Addision’s disease is that you have no way of checking your cortisol levels day to day. It's a constant guessing game of how much replacement to take and when. It's like a diabetic who has no way of checking their blood sugar and guessing replacement every day. Also, because of how rare the disease is, if one goes to an ER with an adrenal crisis there is no guarantee that one will receive treatment. This has resulted in death and other permanent consequences. Addison’s disease is a spectrum disease and the outcome is different for many. Some start replacement therapy and live a normal life. Others struggle for a while before finding stability, while others are never able to recover. I seem to fall in the second category, and still haven't gained my ability to lead a normal life.
How has living with your illness made you a stronger person?
Though I would give this illness up in a heartbeat, I do see some good has come from it. Through this illness and the complications I've had, it has given me the opportunity to guide and support others going through the same thing.
What have you learned from living with your illness?
A lot of medical knowledge I wish I didn’t know, lol. I learned that I know my body best and to always check everything my doctor does. I learned to rely on Jesus for my strength and guidance. That I could live my life in fear of everything killing me, or I can live my life trusting in God.
Did living with your condition inspire you to start a blog or a business?
I have an Instagram account called @Adrenalinsufficiencyadventures where I give information, awareness, and support. Also in my research into endocrine disease, I learned about endocrine disruptors and how harmful common beauty products are. This lead me to a company that is working on making beauty safe for everyone through their products and by advocating for better safety laws
Tell us about your business and where people can find you.
@cleanbeautyforlife is my Instagram account where I talk about the company and how to find safer products.
How will the Healthy Life Planner help you manage your illness in 2021?
Life with Addison’s disease is complicated and one must always be on top of their symptoms. This planner is perfect to help me do just that. Also, it's a great way to find new stressors and low cortisol symptoms. Not to mention the crazy amount of doctor appointments to keep track of and everything you need to tell your doctor.
Do you have any words of advice for others going through the same thing as you?
Have grace with yourself and your body. It’s a whole new language you have to learn and you will make mistakes. Things usually get worse before they get better. Check out NADF for guidelines and a good endocrinologist list. Find a good endocrinologist because most have no idea how to treat this disease and will torture you with their closed minded treatment. Look into the circadian rhythm dosing and find a support group. So much more I could add, but I'll leave it at this. You are not alone. You are not lazy and you will get through this.
Is there anything else you would like to add or say?
If anyone has any questions please feel free to contact me. Looking back on my journey there was so much I wish I had known that would have saved me much heartache. I do not want that for anyone else, and it's one of the reasons I have my @Adrenalinsufficiencyadventures account.
I am seriously so taken back by Brianna and can not imagine having to live my life with Addison's Disease. Brianna to me is the definition of an invisible illness warrior!
Please make sure to leave a comment below and share your thoughts and let us know if you learned anything new.
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In this week’s blog post, Krista shares her story about growing up with Crohn’s disease. She has had a very difficult and painful experience growing up since she was diagnosed at the early age of 9. As you will read in her story, she had to have surgery to get an ostomy bag because her symptoms were getting so bad. An ostomy bag is a prosthetic medical device that allows bodily waste to pass through into a pouch. This surgery often helps give people their life back. I personally felt very moved from reading her story because I know how difficult and scary it must have been to be as sick as she was. I admire how Krista has gained resilience from what she went through and used her experience to create an online community for people with an ostomy bag.
Something that really stood out to me was when she said, "One thing that I’ve learned about living with IBD is to take advantage of the good days because sometimes they can be far and few between." As someone who also has a chronic illness, I know how important it is to appreciate and take advantage of healthy days because unfortunately it is hard to know how long it will last. I really appreciate Krista sharing her story with us, and think that we can all learn from her. Crohn's disease is an invisible illness and often difficult for people to truly understand it.
Tell me a bit about yourself:
My name is Krista, I’m 29 years old. I live in Calgary, Alberta, Canada with my husband. I’m a Kindergarten teacher and a passionate advocate for patients with IBD and ostomies. In my free time, I like to go to the Farmers market, go for road trips to the mountains, hiking and spending time in nature.
What is the name of your condition?
I have Crohn’s Disease, which is an inflammatory bowel disease. With Crohn’s Disease it can appear anywhere in the digestive tract (gum to bum).
At what age were you diagnosed, and how did you handle getting the news?
I was diagnosed with Crohn’s Disease when I was 9 years old. I feel like I handled getting the news of my diagnosis quite well, but it may have come down to the fact that I was young and didn’t really understand what was going on, or how it was going to change my life. I was more upset about the fact that I had to have a feeding tube in my nose and into my stomach. Honestly, the most traumatic part of my diagnosis was getting my feeding tube put in for the first time.
Tell us a bit about your condition and how it has affected your life.
Crohn’s disease is a chronic illness, there’s no cure. It can go into periods of remission with the help of medication, surgery, diet, lifestyle, etc. Over the last 19 years of living with Crohn’s, it hasn’t only affected my digestive tract, but also my eyes, and joints. My life has consisted of doctor’s appointments, procedures, infusions, injections, pills, tube feeds, hospitalizations, surgeries, etc. I’ve never really known a different life.
Some years were smoother and easier and some years were rough and the hardest days of my life (mostly my 20’s). In my darkest and sickest days, my IBD controlled my life. I couldn’t be very far from a bathroom and/or be gone for too long without having access to a bathroom, or else I’d have an accident. Before my ostomy, I was going to the bathroom 20+ times a day and having to wear an adult diaper anytime I left the house because I struggled with incontinence. The years prior to my ostomy surgery in 2018, my quality of life was nonexistent. I struggled mentally with my illness, feeling sorry for myself, and grieving my old life. I had a negative self image of myself because I was losing my hair and struggling to keep weight on due to being so ill. I struggled physically where my body was basically deteriorating. My hair was falling out, my nails were breaking, my skin was pale, and I was frail, underweight and malnourished.
Since my ostomy surgery, my quality of life has improved drastically. Ostomy life definitely comes with different hardships, but I would rather these hardships over the ones I had when I had a colon. I’ve come to accept that my life will come with lots of ups and downs, but I feel like I have the tools that I need to make it through even stronger.
How has living with your illness made you a stronger person?
Since I’ve been living with my illness for the majority of my life, I’ve been faced with many different challenges and struggles over the years. My illness has taught me how to be strong and resilient in some of my hardest medical days. It’s made me a stronger person by knowing that no matter what my illness throws at me in the future that I will be able to handle it.
What have you learned from living with your illness?
One thing that I’ve learned about living with IBD is to take advantage of the good days because sometimes they can be far and few between. Life with a chronic illness is unpredictable and doesn’t always go with your plans. IBD has taught me to focus on what really matters in life (health and family) and not to take the little things for granted.
Did living with your condition inspire you to start a blog or a business?
I started blogging and sharing what my life was like living with IBD in 2017 to educate the people in my own life about it and how it affected my life. I wanted people to know that it is way more than just a pooping disease and how these invisible illnesses can impact someone’s life. I try to be authentic and not only show the good, but also the bad and times of struggle. Over time, this platform has become more helpful for my own healing journey, especially after my ostomy surgery. I was able to find community and made so many friends (some in real life and are now some of my best friends) who are like me. I wish I would have had a community like this as I was growing up. I felt like I was alone in this journey. I didn’t know anyone like me.
Tell us about your business and where people can find you.
I share my story with IBD and an ostomy on Instagram (@my.gut.instinct). Raising awareness and being an advocate for those with IBD and an ostomy is something that my social media platform has allowed me to do. It’s given me the opportunity to work with different companies on some advocacy work for the IBD community.
How will the Healthy Life Planner help you manage your illness in 2021?
Chronically ill patients could benefit from having a planner, like the Healthy Life Planner, to be able to keep track of appointments, symptoms, medications, bills, food log, etc. It allows patients to be able to keep information all in one place and organize easily to be able to bring to GI (gastroenterologist) appointments.
Do you have any words of advice for others going through the same thing as you?
The best piece of advice I could give would be to always listen to your body and what it needs. IBD looks differently for everyone, symptoms can vary day to day. It’s easy to compare ourselves to others who don't suffer from an invisible disease so I’m here to remind you that it’s okay to rest and take things slow if you need to. Remember to always take care of yourself first.
Please make sure to leave a comment below to let us know your thoughts, or if you learned anything new. Also, If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com
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What is the name of your condition?
Post Traumatic Stress Disorder
At what age were you diagnosed, and how did you handle getting the news?
I was diagnosed with PTSD five years ago. Truthfully, I was grateful to know what was wrong with me because I spent most of life struggling with severe symptoms. It was difficult because my family really didn’t believe in psychiatry. Finding out was a blessing.
Tell us a bit about your condition and how it has affected your life.
Everyday comes with a challenge. There could be a trigger, a sleepless night or three, but it affects everything right down to the most basic things like how I shower, the way I sleep, my diet. Sometimes the anxiety is so bad that I wake up and go straight to the bathroom to puke. I’m sitting there thinking I just woke up, what could possibly be triggering me and my anxiety? Shopping can be difficult, but relationships have been the hardest for me. I am talking all around, familial, romantic and platonic.
How has living with your illness made you a stronger person?
I do feel that learning to cope with PTSD has made me a stronger person. I am already an empath, but I feel that it makes me understand others with this illness at a much deeper level because I live it. There are days where my brain wins. It happens, but being able to recognize those weaknesses just makes me want to try harder, and in that I find strength.
What have you learned from living with your illness?
Patience. That was a virtue that was almost unheard of in my brain. I have to be patient with myself and learn that sometimes things can get hard, but it is not the end of the world. That’s one of the biggest issues that I have is catastrophizing and always thinking the worst. I have learned a great deal of patience. If things are not going my way, it’s okay. I still have my struggles, but five years ago I had zero patience.
How will the Healthy Life Planner help you manage your illness in 2021?
I need to keep track of my triggers and my bad days, so that way if there is a pattern of some sort I can remedy that. I also want to be able to use it in conjunction with my therapy and with my psychiatrist. It will make things much clearer for them as far as medication and tools for therapy.
Do you have any words of advise for others going through the same thing as you?
It can and will get better. Ultimately it is an individual’s choice whether they want to get help, but I have always said (as cliché as it sounds) it’s okay not to be okay. So many of us have experienced some nightmarish events in our lives, but those moments don’t have to define us. There are tools and help out there including this wonderful planner.
Is there anything else you would like to add or say?
Don’t give up hope and don’t give in to despair, for as Lord Byron wrote, “Love finds a way where wolves fear to prey”. It is possible to live with these conditions and live a full and happy life. Will there be bumps on the road? Yes, but you can overcome, and it starts with loving yourself enough to get the care you need.
Please subscribe to my newsletter for future updates on new blog posts and products that will be coming to my site soon. Also, please make sure to leave a comment below to let us know your thoughts, or if you learned anything new.
If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com
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Tell me a bit about yourself:
My name is Brandy Haberer, and I’m a disability and autism activist, podcast host, and illustrator. I manage an Instagram account and Etsy Shop called @the.chronic.couple, where I educate and advocate for Autism, chronic conditions like Ehlers-Danlos Syndrome, and mental health through my writing and art.
What is the name of your condition?
My conditions are Autism, ADHD, Ehlers Danlos Syndrome and Mast Cell Activation Syndrome.
At what age were you diagnosed, and how did you handle getting the news?
It took me until the age of 37 to get an EDS and MCAS diagnosis, and I didn’t receive an ADHD and autism diagnosis until 38.
With every diagnosis I’ve ever received, I think that after the initial shock, it was a relief. Each of them felt like validation for all of the symptoms or things I had experienced in my life that were different or brushed off as exaggerations. My behavior now had a reason, and my pain now had a cause. For me receiving a diagnosis was a validating experience that helped my mental health tremendously.
Tell us a bit about your condition and how it has affected your life.
I don’t really feel like autism is an illness, but a neurotype or variance in neurology. I do, however, think that it is a disability because of how society affects my autistic traits. The world is not very accommodating for autistic people, and for that reason, being autistic is disabling. I also have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder of the collagen or glue that provides strength and support to the body. There is a high number of autistic people affected by EDS. Mast Cell Activation Syndrome is a condition that can accompany EDS. MCAS is repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, and difficulty breathing. Without an official EDS diagnosis, treatments of my symptoms were brushed off and not taken seriously because EDS is an invisible illness. Without my autism diagnosis, I wasn’t able to receive the proper supports because I didn’t know what I actually needed.
How has living with your illness made you a stronger person?
I think my conditions have made me a stronger person because they forced me to take care of myself. There were areas where I had problems with boundaries and taking on too much from people. My conditions forced me to stop and take care of myself and put myself first. It shined a light on areas where my life needed work and my boundaries needed strength.
Did living with your condition inspire you to start a blog or a business?
My conditions most definitely inspired me to start sharing to normalize and raise awareness on social media, which then led to an Etsy store with the illustrations I created in my posts as stickers, magnets, and T-shirts. This came after people started asking me if they could print out my illustrations and frame them or put them on their fridge. So I decided to make that easier for them.
How will the Healthy Life Planner help you manage your illness in 2021?
The Healthy Life Planner it’s such a great idea because with chronic illnesses our symptoms fluctuate. A lot of us have food sensitivities and need to keep track of how we feel so that we know our triggers and what to avoid. It also seems extremely helpful for autistic people. Sometimes we forget the mundane tasks that come with being an adult. Having something to remind us, and being able to share our thoughts is incredibly helpful.
Do you have any words of advise for others going through the same thing as you?
My advice would be to put yourself first. If we take care of our mental health, physical health and environment to the best of our ability, then we are more capable of being our best self. We expend so much energy cognitively and physically just existing, that we need to remember that when comparing ourselves to other people. We are stronger than we even realize, and just because we are different doesn’t mean that we are less than.
Please subscribe to my newsletter for future news and updates. Also, please make sure to leave a comment below to let us know your thoughts, or if you learned anything new.
If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com
For this week's Blog, one of my favorite chronic illness warriors that I follow, Sophia, shares her story with us about being diagnosed with fibromyalgia along with 9 other chronic illnesses at the age of 17. 2020 has been a rough year for most of us, but an especially hard year for Sophia, since she was diagnosed with 9 chronic illnesses this year alone! I am blown away by Sophia and her capability to face all of her medical challenges. Especially during a pandemic! To read more about her journey, and learn more about her illnesses, check out her blog at
https://sophiagmoss.wixsite.com/sophiagrace/the-blog
Tell me a bit about yourself:
Hi everyone! My name is Sophia and I am a chronic illness warrior!!
What is the name of your condition?
I have fibromyalgia, AMPS, chronic migraines, chronic daily headaches, chronic fatigue syndrome, scoliosis, TMJ disorder, jawbone growth disorder, familial dysautonomia, and occipital neuralgia.
At what age were you diagnosed, and how did you handle getting the news?
I was diagnosed with scoliosis, in 2018, when I was 15. I was diagnosed with the rest of my illnesses in 2020. At first I was relieved to have an answer, but I was soon scared to see how my life would change.
How has it affected your life?
Ever since I got sick, my friends and family stood right by my side through it all. Every day is different in how I feel. I spend countless hours in the hospital every single week.
How has living with your illness made you a stronger person?
I’m not sure I can say that being chronically ill has made me stronger. It sure has shown me how strong I’ve always been, and how far I can go until my breaking point.
What have you learned from living with your illness?
I’ve learned how much a community can help you through the dark times, and how the best days are really coming.
Did living with your condition inspire you to start a blog or a business?
Yes it did!! I started my Instagram a month before my scoliosis surgery and I started a blog back in March!
Tell us about your business and where people can find you.
I started a blog to share the good and the bad of being chronically ill. You can find my Instagram here and my blog here!
How will the Healthy Life Planner help you manage your illness in 2021?
The Healthy Life Planner will help me keep track of my own symptoms and give my doctor answers as to how I have been feeling. It will also help keep track of medications and take notes during appointments!
Do you have any words of advise for others going through the same thing as you?
Embrace your differences! We were not created to be the same as everyone else. Embrace your mobility aid. Embrace your feeding tube or picc. Embrace it all!
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If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com
]]>The Healthy Life Planner was made not only to help people with chronic illnesses, but also help people who struggle with mental health keep track of their daily emotions, find gratitude, and have spaces to journal. As Bria mentions, the Healthy Life Planner is also a great tool to have during the Covid pandemic. It makes it easy to check in with yourself daily and keep track of how you are feeling.
I hope you find Bria's story as inspirational as I did. 💕
Tell us a bit about yourself:
Hi! My name is Bria. A little about me - I am a 27-year-old Executive Assistant. I live in Boston with my dog Dixie.
What is the name of your condition? Tell us a bit about it.
Anyone else who deals with mental illness knows, it is not always as straight forward as naming a condition especially with the stigmatism involved. The DSM-5 is ever changing and evolving with society and science. I have:
Most people have a base understanding around anxiety disorders and PTSD, however bipolar disorders are misunderstood given the stigmatism's surround them. There are the types of bipolar disorder: Bipolar I disorder involves periods of severe mood episodes from mania to depression. Bipolar II disorder is a milder form of mood elevation, involving milder episodes of hypomania that alternate with periods of severe depression.
Bipolar II is notoriously difficult to diagnose. Patients usually seek help when they are in a depressed state, or when their hypomanic symptoms manifest themselves in unwanted effects, such as high levels of anxiety, or the seeming inability to focus on tasks. Because many of the symptoms of hypomania are often mistaken for high functioning behavior or simply attributed to personality, patients are typically not aware of their hypomanic symptoms. In addition, many people who suffer from Bipolar II have periods of normal affect. As a result, when patients seek help, they are very often unable to provide their doctor with all the information needed for an accurate assessment; these individuals are often misdiagnosed with unipolar depression.
At what age were you diagnosed, and how did you handle getting the news?
I have struggled with mental illness ever since I can remember, from a young age I can recall being overcome with panic in social situations and being overwhelmed by the trauma in my world. I formally began the diagnoses process at the age of 13, though I was not fully aware at the time, all I knew is that I had to go to a doctor and a therapist constantly.
Over the next eight years, throughout the prime years of my youth I subjected to every treatment under the sun. Therapy, DBT, Medication, Hospitals, Behavioral Modification, Residential Treatment, you name it… I’ve been there done that and from start to finish I was misdiagnosed. All this to say, I was RELIEVED to finally receive a diagnosis that made sense to me.
How has it affected your life and how has living with your illness made you a stronger person?
Living with mental health disorders has affected every aspect of my life, at the lowest points I have lost the desire to live, but with the pain and darkness there also is beauty. I would not change anything I have had to deal with, because I love who I am and the life I have built today. I have gained an incredible resilience; I have a grounding relationship with myself and a tribe of incredible women in my life.
How will the Healthy Life Planner help you manage your illness in 2021?
I tend to be super type A when it comes to organizing, lists and calendars are not only what I do for a living as an executive assistant but are also how I keep my life on track! I’m excited to have a location for everything I need to keep myself on track. In this new COVID world we live in it can be so hard to see the progress we are making in our lives, so having a dedicated place for goals I will be able to feel the reward of getting things done!
Do you have any words of advise for others going through the same thing as you?
YOU ARE NOT YOUR DIAGNOSIS. It is so important to remember it does not define you and that you are not alone in what you are dealing with. Find your community, find you tribe, even if it is online, it is so worth it!
I know you are one of the many people who have suffered from Coronavirus. How do you think the Healthy Life Planner could have helped you during that time, and in what ways do you think it could benefit others who have or have had Coronavirus?
I had Coronavirus the first two weeks of March 2020, and it kicked by butt! The Healthy Life Planner would have been a great resource for me to have. I needed to track my symptoms, temperatures, while battling extreme fatigue, and report these all back to doctors, CDC, etc. it would have been helpful to have a central location for all of this. Not to mention it would have been nice to see an inspirational quote or two to make it through the days!
Do you have any advice or words of encouragement for people who are currently sick with Coronavirus?
Don’t be afraid to call people, ask for help, stay connected and REST REST REST!
Please subscribe to my newsletter for future updates on new blog posts and products that will be coming to my site soon. Also, please make sure to leave a comment below to let us know your thoughts, or if you learned anything new.
If you, or someone you know, would like to share your story, please email me at healthylifeplanner@gmail.com
]]>About Me:
Hi, my name is Brea and I am the creator of Healthy Life Planner. I wanted to let you know a bit about myself, and what inspired me to create the Healthy Life Planner.
I am a 31-year-old living in LA, who is one of the millions of people who live with a chronic illness. At 9 years old I was diagnosed with Ulcerative Colitis. Due to my illness, I had difficulty gaining weight. I was so thin that my classmates teased me and called me “skinny bones Jones.” I remember having a ton of stomachaches growing up, but nothing that was too debilitating.
The moment that I fully understood how awful having Colitis is occurred three years ago at the age of 28. It was the most painful and hardest time of my life. It started with bad acid reflux, I couldn’t keep anything down, and was throwing up multiple times a day. I remember my boss even asking me if I was pregnant since I had to rush to the bathroom in the middle of meetings. A few weeks in I began to have horrible stomach pains that felt like swords inside my body. I felt so much urgency that it became hard to be away from a bathroom for more than 10 to 15 minutes at a time. It seemed like no matter what I ate, I would be in the worst pain. The mornings were always the hardest. I would often have to spend hours in the bathroom in the morning, which caused me to be late to work almost every day. As the days went on, I began to feel weaker and weaker. I went from 115 pounds to 92 pounds in the span of a couple months. I remember every time I showered I would look in the mirror and cry because I looked like just skin and bones.
Soon my diet became limited to only a handful of a few very plain ingredients. I would have to eat all my bland foods on repeat and became very jealous passing by people at restaurants. Eating out was impossible for me. I was so weak and in constant pain, that I had to give up my whole social life. I had a hard time even driving or getting my own groceries. I would somehow manage to gather enough strength to Uber to work, but there was a lot of back and forth to the bathroom while at the office. I was so fortunate to have a very empathetic boss that understood every time I had to miss work, leave in the middle of the day for the hospital, or take breaks. When not at work, my time was either spent in bed or in the bathroom. This went on for 4 months until the doctor said that I needed to have infusions every 6 to 8 weeks.
The Idea Arose:
I remember when I was sick with my flare up, my doctor wanted me to keep track of my symptoms. He wanted me to note how often I was going to the bathroom and if I was having any internal bleeding. He would ask how bad my pain has been and when was the last time I had a good day. I remember having all these notes written on my phone about what I was eating for each meal, and about my bathroom habits. It became really unorganized and hard for me to keep track of my symptoms.
That is when I had the aha moment - I should create a planner that is cute and would help people keep track of their health. I have always been a journal lover, so it was important to me to create something that was both a planner and a journal. I started to make notes in my idea journal about what I wanted to include in this planner and what I envisioned it to look like.
The Time Came:
At the beginning of every year I always write down my goals for the year. The first week of 2020, I put making this planner on the top of my list. Two years had already gone by since I had the idea, and I knew I needed to set the wheels in motion. Little did I know that in just a couple months a pandemic would hit, and the world was going to go on lockdown.
When I started being stuck at home with nothing to do but binge Netflix in my free time, I took it as a sign from the universe telling me that now was the time to begin. Right away I started to use all of my free time and energy into creating the ultimate wellness planner / journal.
About Healthy Life Planner:
I created Healthy Life Planner to help people manage their health in an easy and fun way. I didn’t want it to be solely for people with Crohn’s and Colitis; I wanted it to be helpful for anyone who has a chronic illness and even to help those who struggle with their mental health.
I made this planner with the goal of helping people and to make tracking their health fun and easy to do. I included pain and emotion scales each day along with a meal tracker so that you can note if some foods give you more pain then others. You can write down your daily symptoms, when you take your medicine, doctor visit notes, and more. I felt it was important to also include inspirational quotes, mantras, journaling pages and prompts throughout the book to help with your mental health.
Since the Crohn’s & Colitis Foundation is so close to my heart, I will be donating a percentage of my sales to this organization. I want to not only help people with their health, but to help speed up the search for a cure.
What’s To Come?
The Healthy Life yearly planner is just the beginning! I plan on adding additional items to my shop soon. I want to add items that are helpful when it comes to your health, as well as items that help give you motivation and strength to keep fighting. With every illness there are good days and bad days. I want to help people manage their bad days, but also remind them that their good days will come.
Thank you for reading my story,
Brea Weinstein
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