Christina DeSerio is my next guest for the Chronic Illness Support Guest Blog! You can find information Christina has provided about Fibromyalgia as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.

Illness: Fibromyalgia

Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
I am the CEO of Aepios – a free online platform where people can find peer support for their medical condition. I am also a neuroscientist by education, with extensive training in cognitive neuroscience, developmental psychology, and vision science. Having trained in some of the most elite labs in the world, I have experience with a wide range of disorders, treatments, and research methodologies. But perhaps my most important credential comes from having experienced the ups and downs of receiving a fibromyalgia diagnosis and learning how to navigate my condition without sacrificing dreams, ambitions, and responsibilities.  

How long did you suffer with symptoms before you were diagnosed?
I began experiencing symptoms of chronic fatigue, chronic pain, headaches, ulcers, and high anxiety at around twelve to thirteen years of age. I was roughly diagnosed with all of the above around that time, but the underlying cause was unclear. Fibromyalgia was suspected, but more-or-less scoffed at as an anxiety-related issue and dismissed without any serious considerations as to treatment. I was prescribed heavy medications that no thirteen-year-old should be on without serious cause, such as large doses of Xanax. Finally, I was referred to a specialist for an official fibromyalgia diagnosis at around twenty-nine years of age. Even then, it took several visits with specialists before I was finally accurately diagnosed.
When I finally received my fibromyalgia diagnosis, I felt both relieved to have a diagnosis and afraid due to the chronic nature of the illness. My loneliness and fear seemed to be making my symptoms even more pronounced. This is why communities like Aepios <www.aepios.com> are important; We focus on ensuring that nobody has to face a chronic medical diagnosis alone, and we help people learn about possible treatments for their conditions through the experiences of their peers.

What treatments have you tried? Did they help? Did you have side effects? Etc.
Like many people who suffer from fibromyalgia, I have tried a large number of possible treatments and have yet to find anything that is truly effective for managing my condition. I am optimistic that Aepios will encourage others like me to share the treatments that have been effective for them, and that together we can help each other find our way through this overwhelming process of figuring out how to manage our condition.

What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?

•      Consistent moderate exercise
•      Hot baths with epsom salt
•      A higher protein, low-carb diet
•      Good sleep hygiene (e.g., sleeping at the same time every night)
•      Walking in nature

What is something you wish you would have known when you were diagnosed?
Fibromyalgia is a real condition. It is not imagined.  You are not manifesting the condition in your mind. You are in real, physical pain and you deserve for your physical needs and/or limitations to be respected as such!

How does it affect your daily life?
My daily experience is and has been a struggle for nearly as long as I can remember. Beyond the age of roughly twelve, I can’t remember getting through a day without persistent pain, frequently folding over from the pain of just standing in lines at the grocery store, headaches and migraines pounding almost constantly, shooting nerve pain sensations in my arms and legs, debilitating fatigue which has meant that I need to be sitting or (preferably) laying down to do much of my work throughout the day, and a mental fog that requires exceptional effort to overcome in order to perform at the level I require of myself. But I remember that my pain can serve as a learning experience and a gift to others and that helps me stay productive. I can’t always work for long periods of time like my peers, but I’ve learned to be kind to myself by capitalizing on the times of day that are most productive for me and allowing myself to rest when I need to. I’ve found that this strategy does allow me to get more done in a shorter period of time.

What made you decide to create Aepios and what is it?
Aepios is a free online platform where people can connect to others who share the same medical condition, and where they can learn about effective treatments from the real-world experiences of their peers.
The idea for Aepios was originated by two very close friends of mine about ten years ago. They were a couple of brothers in medical school at the time, who, while doing their rounds, realized that medicine is not always the best treatment prevailing. For example, clinicians may suggest the treatments that they are most familiar with, or treatments that they have a greater quantity of, rather than the best treatment on the market. They also saw that there were differences in which treatments were offered according to where someone lives. For example, academic centers, or teaching hospitals, appeared more likely to suggest treatments based on the latest medical breakthroughs relative to medical centers in rural counties. Hence there was a need for patients to be better informed early on following a diagnosis. And who better to provide that information than peers from all over the country who have been going through the same thing? The young doctors decided to create a centralized platform where members could learn about the best treatments out there, and where they could build a strong network of peer support that is free to members.

I met the founders of Aepios in 2019, just before I completed my graduate degree in neuroscience. Given my personal history with fibromyalgia, the mission of Aepios – to provide An Empowering Place to Interact and Openly Share – captured my heart and my attention. But while the concept was great, the website was not achieving its intended goal… yet. I quickly made it my mission to spearhead the redevelopment of the website from the ground up. Almost immediately, I threw all of my years of training and experience leading research programs and developing and managing projects into reshaping Aepios into the company it is today. Together, we redesigned the Aepios website with a more targeted goal of providing an uplifting environment for people to connect with others safely and securely. People have really responded to it! I’m very excited for the future of Aepios and I cannot wait to find more ways to help people in their battle against chronic health problems along the way.

How can those with chronic illness find information without getting overwhelmed?
When you visit www.aepios.com, you will be able to register for free membership and fill out our short questionnaire. This questionnaire is designed to effortlessly match you to the appropriate content and support group for your condition.

How can someone show support?
In addition to providing a space for people to find support, Aepios also strives to give a voice to people with chronic medical conditions who have been successful in managing their condition and want to provide support and guidance to people who are still struggling. The best ways you can do this are to (a) join Aepios and fill out our optional questionnaire to provide information about the treatments that have and have not worked for you, and (b) to join a support group and simply be there for people who are looking for your support.

How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
You can find us online at www.aepios.com, or you can connect with us on Instagram @aepios_healthsupportgroups, and Facebook @aepios.

Take care,
💜Samantha

Heather Foisy is my next guest for the Chronic Illness Support Guest Blog! You can find information Heather has provided about Sjögren’s and Lupus as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.

Illness: Sjögren’s and Lupus

Tell us about yourself, what illness we are talking about today and when you were diagnosed, how, what led to diagnosis, etc.
Hi Samantha, my name is Heather Foisy and I am a chronic illness patient and advocate with Sjögren’s and Lupus. 

How long did you suffer with symptoms before you were diagnosed?
I first became ill at the age of 20 and it took me a total of eight years to get my first diagnosis of an autoimmune disease. That diagnosis was Sjogren’s which is pronounced “show-grins.”

At the time my Sjögren’s was mild, and with a few lifestyle changes I was able to keep moving forward with life in a seemingly normal way. I got married, I had a child, and our family enjoyed travelling together.

At the age of 32, I became pregnant, and sadly had a miscarriage, and this caused my body to go into a major flare up. One year later, I was diagnosed with lupus. 

What treatments have you tried? Did they help? Did you have side effects? Etc.
Sadly I’ve been through the ringer when it comes to different treatments and medications to deal with my autoimmune diseases. 

The first two medications that I tried for my Sjogren’s I ended up being allergic to were hydroxychloroquine and naproxen.

Due to these reactions, I decided not to try any other medication and I focused on lifestyle changes as best as I could. 

In my 2018 health crisis, I wasn’t able to manage my health with lifestyle choices any longer and I had to resort to medication in order to help me. 

I was first put on Azathioprine, which is an immune suppression medication. Often with this medication given for autoimmune diseases, you have to wait 3 to 4 months to see if the medication is going to work or not. In my case after the four-month mark, I had not felt any improvements and in fact my condition worsened and left me bedridden.

My rheumatologist had to put me on prednisone, which is a steroid medication used to target severe inflammation in the body. It just did the trick and helped me quite a lot, but the medication is not safe to be on long-term and so I started to taper off. Unfortunately for me, I wasn’t able to taper off without being with severe and crippling pain and so I went through ups and downs for 2 1/2 years being on prednisone at varying doses. 

During this time, I started mexotrethate which is a low-dose chemotherapy drug often used for treating arthritis conditions like rheumatoid arthritis, Sjogren’s, and lupus. We started to see some improvement with mexotrethate, but I was not able to get off of prednisone.

Fast forward to the summer of 2020, and this is when my rheumatologist helped me to apply for a new medication to Canada called Benlysta. Benlysta is a new FDA approved medication and it was developed specifically to help lupus patients who are having difficulty getting off of prednisone, which was exactly my case.

After a few months of Benlysta, I was able to taper off of prednisone safely and I am so grateful. 

Do you have other illnesses? If so, would you like to mention them? What are they?
Yes, I have Vasculitis, which is in the musculoskeletal family also. Vasculitis is when your blood vessels become inflamed and burst. It typically presents in the extremities, and crawls it’s way inward. If it presents in your internal organs, you are at risk of death. Luckily I caught it before I had that type of involvement, and I’ve been able to get it into remission. 

I also have peripheral neuropathy, which is a comorbid condition of Lupus and Sjögren’s. It is neuropathy of your hands and feet. For me, it first started presenting as deep crushing bone pain and the feeling that my feet were on fire or being bitten by fire ants. When I came to my rheumatologist with these symptoms they quickly sent me to a neurologist to be tested and that is when I got my peripheral neuropathy diagnosis. I started Lyrica, which is a medication used to treat nerve pain. Once I got onto the right dose, my neuropathy reduced and the pain minimized. 

What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?

Medication aside, there are quite a few things that I have felt that have helped me to cope the most with my chronic illness. 

The first is surrounding myself with loving and supportive people. I have to admit there are some friendships that weren’t serving me in a healthy way. It took me a while to come to terms with that, but once I did, I was able to remove some people from my life and that made room for new loving and welcoming friendships to come into my life. These friendships that I now have are friendships that I know will last me a lifetime because these individuals have showed over and over that they can love, support, and help a person who has ongoing health issues. 

Furry friends are definitely the next thing that has helped me the most. We are a cat family; we love cats and these feline friends have helped me get through some pretty touch days. Be it cat, dogs, birds, lizards or horses, animals have a special way of helping people heal, and I have used this knowledge to help me on my hardest days. 

Finding pain relief products have also been very helpful for me. It’s been trial and error, but I’ve been able to find a few items that help me the best on my hardest days. These include an electronic heating pad that I can use in my bed or chair, hot or cold packs that I can keep in my freezer or in the microwave to help me target specific areas of my body, pain relief creams like tiger balm to help with nerve pain, and even some interesting products like heated socks to help me on those cold winter days when I want to spend time with my child outside.

Of course I save the best for last and one of the things that helps me the most on my hardest days is having my young son Phoenix cuddle up to me in bed where we can read stories, colour, share days, or share our giggles. 

You are a Chronic Illness Advocate, how did you get started? 
I am now 35 years old. My illnesses, Sjögren’s and lupus have caused me to be unable to work a normal 9-5 job. As a way to battle the depression that came on with losing my career, I started a website and blog (www.phoenixsoulwarrior.com), where I share my story of illness and help provide resources to patients who need it. 

This is where my chronic illness advocacy started, and I continue to try and build relationships and resources that patients can continue to use day in and day out. 

What made you decide to write your book I’m the Biggest Helper With Momma’s Autoimmune Disease?

Well that’s quite an interesting story. In 2018/2019, in the thick of a major life changing flare up with my lupus and Sjögren’s, I struggled to do basic tasks like eating and washing. There were times when I was stuck in bed for weeks at a time, and even had to respite to using a wheelchair from time to time. 

At Christmas in 2018, my grandmother and my son's great grandmother gifted him a book called The Little Engine that Could for Christmas. Young children like repetition, and so for weeks after Christmas my son and I would read that book at bedtime over and over and over.

A few weeks into reading that book at bedtime I noticed some behaviours that started to change in Phoenix, my son. I started to notice that in moments where I was having difficulty with a task such as trying to open a jar of pasta sauce for dinner, he would witness my frustration and then give me some really adorable and encouraging words like “don’t give up, I know you can do it!”

As heartwarming as this sounds, in those moments I was actually getting more frustrated. One night, at bedtime, I tried to impact some of those feelings to understand where they were coming from. I eventually landed on the fact that I was getting frustrated with Phoenix’s encouraging statements because he was encouraging me to do things that I could not do because of my illness and disability. No matter how hard I tried I physically was not able to do the task; no amount of encouraging words was going to help me in those moments. 

And so, I sat with that for a little while, actually I sought with it for almost an entire year until the fall of 2019, when my family and I went on a trip to Florida for holiday. This trip was the first time that Phoenix saw me in a wheelchair,  and I could tell by his body language that he wasn’t really sure what to think of it. 

Disney world gave us ample opportunity for Phoenix to jump up on my lap and for him and I to have close conversations to talk about wheelchair use and about how mommy is sick sometimes, while we got rolled off to the next event or ride. 

During this trip Phoenix, became my biggest helper. He wanted to do so many things to help me that it just completely melted my heart. He wanted to help push the wheelchair, he wanted to help me get my water bottle out of my backpack, he wanted to open and close my car door for me, carry the groceries inside, and the list goes on. 

A couple of weeks after coming home from this vacation I was sitting and reflecting on vacation, and my brain finally put together these two things. The first, in those early days when Phoenix was trying to encourage me to do things that I couldn’t do and second our trip where he was helping me with all of the tasks that I was having difficulty doing and the thought just clicked. I need to share this story. 

And so that started me down the path of starting to write this children’s book. I took a lot of time to reflect on all of the activities that Phoenix had done to help me over the past year or two with my illness and I incorporated those moments into this book. 

I also wanted to give parents a great visual resource that could help young children understand invisible illnesses and this book does just that. 

Our book I’m the Biggest Helper With Momma’s Autoimmune Disease was written by a chronically ill mom trying to help out other chronically ill parents, grandparents, aunts, uncles, teachers, coaches, and the list goes on. 

What is something you wish you would have known before becoming a chronically ill parent?
I wish I had known how bad my health could get so quickly. I didn’t know a miscarriage could ravage my body in the way it did, and I wonder if this health crisis could have been avoided if I had handled the miscarriage and my health in a different way. 

How does being chronically ill and a parent affect your daily life?
Well, if I am being honest, everything is harder. I am incredibly lucky to have a husband who is supportive of me and my health. We work together to get me feeling the best I can, and that didn’t happen overnight. It’s been a lot of work on both our parts. 

One of the hardest things To cope with is the fact that I can’t go to everything all of the time. I have to manage my energy and in doing so I can only pick a few activities a week to participate in and so my husband and I often sit down and talk about which activities I most want to attend and we figure out a way or make a plan in order for that to happen.

How are you doing now with symptoms etc.?
I’ve gotten to a point where my condition is more level than it was two or three years ago when the health crisis for me hit. However, I haven’t been able to improve enough to get back to work which is kind of sad for me. I am incredibly thankful that I started working on a children’s book and that  I’ve had that project to work on to help me both on my good days and on my bad days.

Is there any other information you would like us to know about your book?
I’m the Biggest Helper with Momma’s Autoimmune Disease is a book written to help other autoimmune disease parents, grandparents, aunts, uncles, teachers, and coaches. You can learn more about our book by visiting our website www.phoenixsoulwarrior.com/book. We have partnered with some charities for fundraisers and you can find information on those fundraisers on our website.

Where can someone purchase your book? 
If somebody would like to support our charity fundraisers they can visit our website which will have a link to our Etsy store.

Alternatively, Amazon is selling our books, however, due to the fees we aren’t able to donate as much per book to charity as we can through Etsy. 

How can someone show support for your book other than through a purchase? 
There are tons of ways that you can help us. The first is to share this book with people in your life who you think might benefit from reading it. Simply copying and pasting our website and sending it to a friend, parent, or a teacher who may have an autoimmune disease will help us spread the word.

We would love to get this book into schools all over the world and again, the best way is to share our book or website with a teacher or education professional in your life.

Sharing about the book on your social media is also incredibly helpful and helps to spread the word about this book. 

Any and all support from our readers is greatly appreciated. 

How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Website: www.phoenixsoulwarrior.com 
TikTok: @phoenixsoulwarrior
Email: PhoenixSoulWarrior.com
Facebook Support Group: https://www.facebook.com/groups/498006117587192/

Take care,
​💜Samantha 

Photo credit: ​ Brayden Snow Photography