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 

Karina Sturm is my next guest for the Chronic Illness Support Guest Blog! You can find information Karina has provided about Ehlers-Danlos Syndrome (EDS) as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.

Illness: Ehlers-Danlos Syndrome (EDS)

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.
Hi, my name is Karina, and I am a freelance journalist from Germany who lived in San Francisco for six years. I also like to make films but wouldn’t call myself a filmmaker yet. My work’s main focus is on medicine, science, chronic illness and disability. It’s especially important to me to represent my community accurately, which isn’t always the case in media. Journalism isn’t the first degree I finished. In the past, I worked as a research associate in a biotech research lab. However, when I became severely ill in 2010, I had to quit my job, and that’s really where my chronic illness journey began. 

So let’s give you a short summary of what happened to me over the last decade. 
In 2010, I underwent a medical treatment for my neck pain and frequent headaches, and after that, nothing would ever be the same again. I got injections into the joints between my vertebrae; something went terribly wrong, and I almost died. Over the next months, I developed severe neurological symptoms; for example, I stopped breathing at night, couldn’t feel my legs or arms properly, the whole left side of my body went numb, and my motor skills were off. I thought I had a stroke or something similar, but I didn’t. Additionally, my neck started to crack with every movement, and I felt something shifting every time I would nod or turn around. I went to see doctors over doctors - none of which knew what was wrong with me. Like many other women, I was dismissed, belittled, and gaslighted. ‘It’s all in your head,’ they would say, or, ‘You are just depressed.’ 
I started to research myself and ordered my own tests. After six months, I finally got diagnosed with craniocervical instability, a condition that affects the area between your skull and the first two vertebrae of your cervical spine. The ligaments around my neck were too lax and unable to hold my bones in place. When those bones shift, they can put pressure on surrounding nerves, the spinal cord, and blood vessels, which is exactly what caused my neurological symptoms. Nobody knew why I had this at such a young age -  I was only 24 years old. 

I started physical therapy in the hopes of stabilizing my neck through my muscles. I tried all available techniques, from osteopathy to heavy weight lifting, but all that happened was that additionally to my neck, other joints started to become loose and unstable as well. This didn’t make any sense. So I started to look for answers and different therapies again. Four years after the onset of my acute symptoms, I sat on a plane to the US - my last hope to avoid surgery for my neck and to find out why my whole body seemed to be falling apart. I barely spoke English back then and hadn’t left Germany often overall. I was a young, very ill, terrified woman, but desperate enough to take this step. I needed answers. 

In the US, I underwent a painful treatment with thousands of injections (prolotherapy) that didn’t have the effect me and my doctor wished for. However, he, unlike my German doctors before, didn’t give up on me. He was convinced there was an underlying cause for my multisystemic issues, and he sent me to a neurosurgeon in Maryland. I didn’t know this back then, but this surgeon was an expert for the condition I was living with my entire life and the cause for all my symptoms: Ehlers-Danlos syndrome (EDS). EDS is a hereditary connective tissue disorder that can lead to a myriad of comorbid conditions, one of which is craniocervical instability. After a few hours of examination, I was diagnosed with EDS and several comorbid conditions along with it in 2014. 
 
How long did you suffer with symptoms before you were diagnosed?
I have been living with severe neurological symptoms for four years until I got my Ehlers-Danlos syndrome diagnosis. However, in retrospect, I had some minor issues since childhood. For instance, I always had intense nose bleeds as a kid that wouldn’t stop and needed emergency care; whenever I did any sports - I was a very active child and young adult as well - some body parts would hurt afterward, and I needed a lot of sleep to recover. I had gastrointestinal problems all my life and some other minor issues, nothing that really bothered me too much. I also thought it was normal to be in pain. Since none of my problems limited me in any way, I didn’t seek medical care for it, and the few times I did, doctors didn’t put the pieces together.  

What treatments have you tried? Did they help? Did you have side effects? Etc.
Oh gosh, I tried all kinds of regular medicine, but also spent a lot of money on alternative treatment options - especially during the time where I did not have a diagnosis. The main problem with being chronically ill but not diagnosed is that all treatments you try can potentially harm you because it’s not a specific treatment for your condition. You are basically just experimenting in the hopes something will help. I had many harmful treatments before I knew I had Ehlers-Danlos syndrome, and so did most people in my community. After I finally received my EDS diagnosis, it got better since we could now tailor my therapies to my needs. What helped me the most was a combination of several approaches: medication for my chronic illnesses like mast cell activation and chronic pain, physical therapy to strengthen my muscles or physical activity in general (but very slow-paced), mental health support, assistive devices such as braces and mobility devices, and lifestyle adaption. With EDS, I don’t think there is a one-size-fits-all solution. It’s a lot of trial and error, and we all have such different symptoms. EDS can potentially affect any organ or any part of the body, so it always depends on the specific symptoms and comorbid conditions a person experiences. 
  
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.)?

1. My diary/blog: Writing - whether in my diary or on my blog - is healing for me. It’s always been my most important coping mechanism. It’s how I stay balanced. 
2. Heavy Metal: I love to listen to Heavy Metal while going on a long walk. It always calms me down.
3. Romcom books: Especially when life is really dark, I like to read easy-to-digest, funny romcoms where I can hide for a bit. 
4. Paddleboard/Kayak: I am generally the happiest version of myself when I can spend time on or at any body of water. Paddleboarding is like mediation for me. 
5. My laptop and internet: This might sound trivial to many healthy people, but I don’t know where I would be without the option to connect with my community, friends and family via Skype, Facebook and others. If you can’t leave your apartment much due to your chronic illness, you need something else to connect socially, and for many people with chronic illnesses, social media is a window to the outside world.  

Do you have other illnesses? If so, would you like to mention them? What are they?
Ha, how much time do you have? Currently, I count 22 chronic conditions/symptom complexes. I never actually counted those and am a bit shocked now myself. The list is growing annually, though. Let’s see what we got.
My main diagnosis is Ehlers-Danlos syndrome, but then I also have an autoimmune condition (Hashimoto’s), mitral valve regurgitation, allergies, idiopathic lymphocytosis, mast cell activation syndrome, craniocervical instability & lower c-spine instabilities, chronic fatigue, temporomandibular dysfunction, vitamin deficiencies, lumbar spine prolapse, decreased platelet function, dysautonomia, small fiber neuropathy, sicca syndrome, scoliosis, thoracic outlet syndrome, factor VII deficiency, brain stem lesion, interstitial cystitis, MALS, SI joint instability, and some others…

What is something you wish you would have known when you were diagnosed?
I wish I would have known 
...more about life as a person with a disability; a person that belongs to a minority - even though it’s a large minority.
...that I have to advocate for myself, and I don’t have to just accept being gaslighted by medical professionals. 
... that I am OK the way I am - sick or healthy
...that I don’t have to ‘prove’ my value through achievements at work or sports. 
...that I was simply enough as a person. 
...that becoming ill and disabled is NOT the end. It’s just the beginning of a different life that can be as happy as any other life. 
...that as much as I try, I cannot and don’t need to become my healthy self again. 
...I am actually a better person now than I ever was before becoming ill. 
 
How does it affect your daily life?
EDS and all my other conditions pretty much affect all parts of my daily life, but after over a decade, I have learned to adapt to all the symptoms in a way that I don’t notice my limitations during regular life. Once I get out of my routine and need to enter the ‘healthy, non-disabled’ world, my limitations become a lot more apparent. I truly believe if our society would be more used to people with disabilities and include them more often, I would not be this limited. 

Let me give you some examples. 
One EDS symptom that’s always present is chronic widespread pain. When I say widespread, I mean pretty much every part of my body hurts - some more, some less. My worst area is my spine, especially my neck and my lumbar spine. Both are severely unstable. So walking is tough some days because of my lumbar instability but sitting, driving a car, or worse, a bus, is sometimes impossible with my neck. Now, some days, you can’t walk, but you also can’t drive, which means, you simply cannot leave your house. If you still have to, for instance, see a doctor, you will face the consequences soon after, which for me usually looks like a day or several days with pain spikes and me being unable to leave my couch. A simple fix for an issue like this would be if doctors generally offer Zoom appointments - many did during COVID but not before. It would save me so much energy and pain. 

Another problem I have especially during summer is that my heart rate fluctuates very much when I am standing, and I might faint if it’s too hot (postural orthostatic tachycardia syndrome). When I go out, for instance, to a grocery store, and I take public transportation, I often need to sit down. Oftentimes, all seats are taken, and even if I find one, it doesn’t take more than two stops until an elderly person asks me to get up (and I have a hard time arguing that I need to sit too). Granted, this is mostly a problem I have with myself. However, it is also something society teaches us. It’s this misconception that one needs to see an illness or disability. There is no such thing as an invisible illness, especially not if you are young. 

EDS affects my mental health as well. Often, it’s frustrating to lose certain abilities from one second to another. Since EDS fluctuates so much, I can go from being able to do certain activities to having severe flare-ups the next day. Additionally, of course, chronic pain itself is affecting my mood as well. However, the worst part on my mental health is the constant ‘pretending.’ Again, since the people around us often cannot deal with chronic illness and feel uncomfortable around me, I tend to simply say, ‘I’m OK’ whenever random people ask me how I am feeling. Sometimes, it’s not only strangers I pretend to be fine for; it’s also family and friends, just for different reasons. People I love and that love me can get really worried if my health goes downhill, and if they worry, I feel even worse. So sometimes, I smile through the pain and pretend to be fine. But playing this role of the strong person that’s always just OK no matter what happens can be extremely straining and exhausting. 
EDS affects my life in many more ways, but maybe these few examples show how many hurdles chronically ill people have to face every single day. And often, it’s a combination of several. 
 
How are you doing now with symptoms etc.?
That’s almost impossible for me to answer. I have so many symptoms on a daily basis from all of my conditions. One day, one symptom is dominant; the other day, another symptom is the worst. No day goes by where I feel fine, but after 11 years with EDS & Co, I managed to find coping strategies that allow me to put aside my symptoms for parts of the day and focus on something else. They don’t ever go away, but they are less in the foreground. My main symptoms most of the time are related to my neck instability; for example, my arms are getting weaker and weaker over time, my skin is numb, my vision might get blurred. Then there are other symptoms from the mast cell activation or POTS, which, in my case, mainly cause gastrointestinal issues and heart rate fluctuations. Then, I have typical EDS issues like chronic pain, fatigue, temperature dysregulation, brain fog, bladder issues, dizziness and so on. 
All in all, I would say my symptoms are getting slightly worse every year, but I found ways to accept and adapt to my issues. 
 
Is there any other information you would like us to know about your illness?
In general, I think it’s important to recognize that EDS is a wide spectrum. People can be severely disabled from it; others might only have minor issues; and many are somewhere in the middle of the spectrum. But all these experiences are mutually valid. Nobody should be discriminated against for not being as sick as someone else - I genuinely hate if people with chronic illnesses compare each other. Even worse, I hate it if somebody tells me, ‘Well, you can be happy it is not cancer.’ Of course, I don’t want to have cancer. And of course, I appreciate all the abilities I still have, but life is still pretty challenging, and whatever illness someone has, for that specific person, it is incredibly challenging. I also would like people to understand that many illnesses - even common ones - might not be visible to the outside world. So why don’t we all just stop judging others? We can never know how someone feels unless we actually walk in their shoes. 
 
What piece of advice do you want to give readers?

1. Never ever give up! 
2. Don’t let anyone else tell you how to cope with your condition. Do what feels right to you. 
3. Listen to your gut, and don’t take any sh*t from anyone else. If people aren’t understanding or kind to you, you don’t need them. 
4. You are great the way you are - whether you are working full time or not at all; whether you have kids or decided not to have kids; whether you are mildly affected or severely affected. 
5. If you don’t think your doctor got it right, ask for a second opinion.
6. Don’t be afraid to speak up.
7. Don’t be afraid to ask for support if you are struggling.
8. Always do your own research. Never assume medical professionals do it for you.
9. Live life to the fullest for as long as you can - things might change fast at some point.

Well, I guess now I should actually take my own advice. :)
  
How can someone show support?
I believe the best ally actually gets educated about the condition and does this without me asking for it. I can’t tell you how much I love my friends who tell me they read one of my articles or even my blog in order to understand me better.  
 
How can readers connect with you?
Journalistic Portfolio: www.karina-sturm.com
Bilingual Blog: www.holy-shit-i-am-sick.de
Film Site: www.we-are-visible-film.com
Facebook: @karinasturm86
Instagram: @karina.sturm
Twitter: @KarinaSturm

Take care,
🖤🤍Samantha

​Amy Lynn Di Cristo is my next guest for the Chronic Illness Support Guest Blog! You can find information Amy has provided about having surgery during a pandemic as well as some of her journey. We hope you find this information helpful in your journey with having a surgery during COVID-19.
 
Topic: Having surgery during Covid-19 pandemic

Tell us about yourself:
I’m from Northern New jersey.

What type of surgery did you have?
Hernia surgery for multiple hernias. 

I am no stranger to surgery. My surgery in July of 2020 was not my first rodeo. As someone with endometriosis, I have had too many surgeries. I have endured multiple excisions. I have had my gallbladder out. I’ve had a D&C for a retained placenta and a miscarriage. I have even had hip surgery. However, nothing prepared me for this experience. This surgery was vastly different from the others, because I had surgery during the COVID-19 pandemic.

It all started with a hernia that I had been successfully ignoring for a long time. It was discovered when I had recurrent pelvic pain and underwent an MRI. I had planned to leave it be since it was not bothering me. Or rather, it did not bother me enough to do something about it. Even when undergoing hip surgery and my excision surgery, the hernia, since it was not bothering me, was suggested by both the hip surgeon and my excision surgeon to let it be.

In March of 2020, the COVID-19 pandemic hit. It turned our world upside down. Living in New Jersey, we were hit hard. On a somber note, my grandmother-in-law, whom I was close with, died of COVID-19 in April. My husband, a teacher, worked from home and my kids were doing school remotely. I was set to start a job, and my job offer was retracted. As a result, I spent a lot of time at home.

Like most people when in quarantine, I realized my house was ugly. I started, along with my husband, repainting rooms, we did some construction, cleaned out our basement, you know, normal quarantine stuff. I was painting a mural in my daughter’s room when suddenly, I felt a nagging, twisting pain. It didn’t go away. And then there was a lump in my groin. I couldn’t ignore the pain any more.

I consulted with the hernia surgeon I had seen a few years earlier. Rather than trekking to his office, this time it was done as a phone consult. “That lump is pretty damning evidence that the hernia has to be addressed,” said my surgeon. He recommended having it addressed before it became a medical emergency. We discussed the basics of how the surgery would go. I felt pretty at ease, having surgery, thinking we could do it at a surgery center. However, because of my significant medical history, especially having had a vascular issue, it needed to be done at a hospital in New York City.

The stress began to rise. I worried, what would surgery be like during a pandemic? Because of my experience, I want to share what it was like, at least for me. Obviously, as we all know in the chronic illness world, things will vary, on a lot of different scenarios. With the state of the world, you may be trying to schedule surgery but can’t due to limitations on space in the hospitals. You might be worried to even try. You might be dreading the COVID test. You might be worrying how you stay safe in a hospital.

For me, my experience with surgery during a pandemic went like this. My date was contingent on the numbers of COVID-19 cases and if elective surgeries were happening. Lucky for me, I was able to get in when the numbers were lower. My surgery was rescheduled at one point, because the numbers had gone up and they wanted to wait on elective cases again. When the first reschedule came through, I was frustrated, upset, and sad. I wanted to just get it over with and move on with my life! However, I recognize that my safety was being considered and so was my surgeon’s! While at the time I was frustrated, I understand now the importance of why rescheduling and cancellations happen during COVID-19.

Prior to my surgery, I had to go for medical clearance. For those who have never gone through that, it is basically like a physical, right before surgery to make sure that you are healthy. That went right as rain: everything checked out. Once I was cleared medically, I was prescribed to go for a COVID test, AKA the brain tickler.

The brain tickler consists of a q-tip going so far up your nose that you’re SURE it’s going to touch your brain! You have such an awful tickling sensation that your eyes will water and you will feel the world’s most epic sneeze coming on! Prior to surgery, most hospitals will want you to go right before your surgery and become a hermit after to ensure that you will not get COVID before your surgery. Unfortunately for me, my results were delayed significantly. I ended up needing to do the test three times prior to my surgery. It was not a pleasant experience, but it is necessary to help keep both you and your surgeon, as well as the hospital staff safe.

Once I had my brain tickler test done, I became a hermit and none of us left the house. We remained at home and binge watched Disney movies and played Animal Crossing. Finally, it was surgery day. To prepare for surgery, I did some online shopping for new pajamas and groceries. A huge perk right now of the pandemic is being able to shop in pajamas! I added lots of fruits and veggies into my Stop and Shop order and when my food arrived, I cooked some meals ahead of time. I knew that this time, I would not have other people around to help afterwards. There would be more responsibilities on me. I arranged for some new puzzles and activities for my kids. I also made sure the house was really clean before my surgery, since it made me feel better to be able to have something within my control.

Surgery day was typical and strange, at the same time. A lot of the normal typical things happened on the day of my hernia surgery; many people asked me my name, my date of birth, what I was having done. I also had the surgeon come by, obtain consent and then make sure I didn’t have any last minute questions. It was strange this time around because per the hospital’s policy, I could not have anyone go with me this time. Some hospitals may allow one support person to go with you. Some may allow one to two visitors once you go to your room. This time around for me, I was not allowed anyone, for the duration of my stay at the hospital.

I was nervous because of this. Usually, my husband would spend the pre-op time cracking jokes, talking with nurses, and trying to keep me calm. This time, my husband dropped me off at the front of the hospital and I walked in, navigating the winding halls of the hospital myself. Even with being “alone” I did not truly feel alone though. The staff in the hospital understand that many of us are going into this alone. All the staff involved in my care for my surgery seemed extra attentive and very patient. I’m sure they could see it in my eyes that I was scared.

The hospital during COVID times is again odd and familiar at the same time. There were arrows in blue painter’s tape on the floor, signaling one way traffic. There were designated elevators and whole floors for COVID patients.

When I put my hospital gown on, they had me remove my own mask and put on a medical grade mask. My surgeons, anesthesiologist, and nurses all came on with masks. Finally, it was my turn to go to the operating room (OR). This time there was no kiss goodbye from my husband. I took a few deep breaths and was escorted into the OR.
Like so many times before, the OR staff did what they could to get me comfortable; an extra blanket, a joke, holding my hand, and playing a Bon Jovi song as I was going under. I felt less scared, because by this point, it was a part of the surgery journey I was well acquainted with. The anesthesiologist removed my surgical mask and replaced it with an oxygen mask. Suddenly the song became fuzzy and my vision went black.

The next thing I knew I was out of surgery, and hurting. I had an oxygen mask on.  Pain medication was administered and I fell asleep again. When I was awake enough to no longer have an oxygen mask, I was given another medical grade face mask to put on again. Ice chips and crackers were offered and in between bites and sips, I was able to take off my mask, and I quickly replaced it. Eventually I made my way to my room and lucky for me, I was alone. I was able to remove my mask while in the room by myself. However, when any staff came in, whether it be a nurse to check my vitals, or someone bringing food, my mask had to be put back on, not only for my safety, but theirs as well.

While it was scary to be alone, I had the ability to really rest without distraction. There was a greater responsibility on me to make sure I advocated for myself, when I needed more medication, or if I was having any sorts of difficulty. It was a more restful experience, without having a stream of visitors. Being well planned for my recovery at home helped a lot as well. I made sure that prior to surgery, we had groceries and easy to grab food for me. I made sure there were things to keep my kids entertained, since this time around there would be no ability to have a babysitter. All in all, we survived this experience of having surgery during a pandemic.

The take away from my experience is that safety is paramount right now. Truth be told, I felt incredibly safe having surgery, even during a pandemic. Protocols were followed. Everyone was incredibly aware and vigilant.  While it was a lonely experience to have surgery during a pandemic, it was a more restful one. There was less distraction and I was able to truly focus on healing.
If you are planning on having surgery or have a surgery scheduled for during the pandemic, take deep breaths and take heart. This will be ok. It may be a completely different experience from what you are used to, but having things well planned out and going in knowing that things will be different will help ease the pre-surgery jitters. 

How can readers connect with you?
Facebook: Amy Lynn Di Cristo
Instagram: LilyDayDreams

Take care,
💛Samantha

​Lucjan B. from Worry Head is my next guest for the Chronic Illness Support Guest Blog! You can find information Lucjan has provided about endometriosis and supporting his wife M. with the illness. We hope you find this information helpful in your journey with chronic illness.

Illness: Endometriosis

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.
Today we are talking about Endometriosis which is a debilitating disease affecting 1 in 10 people across the globe. Endometriosis is a condition where tissue similar to the lining of the womb (endometrium-like tissue, called endometriotic lesions) somehow implants outside the womb. Endometriotic lesions, which are like blisters can be found anywhere in the pelvic cavity. They can be found on the ovaries, Fallopian tubes, the uterosacral ligaments and pouch of Douglas (situated behind the womb), and also on other organs in the pelvic cavity such as the bladder, the bowel, intestines, colon, appendix and recto-vaginal septum/rectum. It can also be found rarely in the liver, diaphragm, lungs, eyes, spine, skin and brain. The lesions bleed every month and there is no way for the blood to escape so this causes a lot of inflammation and pain, and can cause scarring and adhesions whereby the organs start to stick together.  My wife was diagnosed at laparoscopy in August 2019, in London where we live.  She was 44 years old at the time and was found to have stage 3 / 4 with deep infiltrating disease. The endometriosis was found on one ovary presenting as an endometrioma cyst, on her uterosacral ligaments, pelvic side-wall, bladder, pouch of Douglas at the back of the womb and she also had recto-vaginal endometriosis.  She had suffered 6 years of painful, heavy periods, low back pain and sciatica, heartburn, IBS, bladder symptoms and anaemia due to the heavy bleeding. Sex was also painful for her and she had also started to suffer with her mental health due to the debilitating symptoms, she was previously a dance instructor and performer, but had to give this up. She attended her GP on multiple occasions over the years having ultrasound scans, a hysteroscopy and finally an MRI.  The investigations up until the last year before diagnosis were always normal and then they found an endometrioma on her right ovary which prompted referral for an MRI, which was normal apart from the endometrioma, and then finally at laparoscopy she was diagnosed and treated with a mixture of excision surgery, ablation and she had a rectal shave where they shave the lesions away rather than cut in to the muscle tissue.

How long did your loved one suffer with symptoms before being diagnosed?
She had been suffering for 6 years with symptoms before she was diagnosed and she considers herself quite lucky as some women suffer up to 20 years before they know what is going on. 
 
What treatments has your loved one tried? Did they help? Did they have side effects? Etc.
She tried the progesterone only pill as she could not take the combined pill due to migraines and her age, but she started to develop worse changes in her mood, which became worse than dealing with the pain so she stopped it. They tried her on antidepressants but she had a bad reaction and decided that she would rather have the pain, as it was more dangerous to play with her mood when she was already suffering with mental health problems. She tried the Mirena IUD but it was too painful and she had mood problems again.  In the end she finally had surgery and after this she opted not to take hormones and focus on diet, exercise and keeping her stress levels as low as possible.  

What are five must haves that your loved one can’t live without that help them cope with their chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
Husband, Chiropractor, Psychotherapy, Dr Google, and Books

Does your loved one have other illnesses? If so, would you like to mention them? What are they?
My wife suffers with IBS and is currently being investigated for fibromyalgia.  She also has Obsessive Compulsive Disorder which she has had on and off throughout her life when she has been under stress. Obviously with all that has happened and with the current Coronavirus outbreak this has triggered her OCD.

What is something you wish you would have known when your loved one was diagnosed?
The right specialist. I think my wife wished she had known that she had had this disease sooner, as maybe it wouldn’t have gotten to such a severe stage before her first surgery, but on the other hand she didn’t experience any symptoms until she was 38.

How does it affect your loved one's daily life?
She cannot plan much, as she never knows if she will be up to the task.  She feels guilty a lot due to having to cancel arrangements last minute.  When she has symptoms she struggles to concentrate on her work and get her normal daily activities done and feels completely drained and exhausted by the evening.  She doesn’t sleep well either, constantly getting up in the night due to pain, bleeding or IBS symptoms.
 
How is your loved one doing now with symptoms etc.?
Since the surgery her periods are not as painful and heavy, she still has digestive issues normally around ovulation and her period, but she is now experiencing flares of new widespread pain and fatigue hence the reason she is being investigated for fibromyalgia.

Is there any other information you would like us to know about endometriosis?
The effect of endometriosis on couples regarding intimacy, financial impacts and also fertility issues. Couples dealing with endometriosis have huge strains on their relationships firstly with regards to intimacy as with some women (my wife included) penetration can be very painful or can trigger pain and new ways of having an intimate relationship need to be explored. Not to mention the fact that even if women with endometriosis don’t experience painful sex, the other symptoms can drain them of energy and then sex is the last thing on their mind. Financially, it can be difficult if one partner cannot work as much or sometimes cannot work at all due to their debilitating symptoms and then there is the issue of fertility.  This of course doesn’t affect all women with endometriosis, but in those that it does it can devastate their lives as well as their partners’. Unfortunately, my wife and I never managed to conceive, but she was struggling in pain during the first 5 years of our marriage, so that was the last thing on her mind at the time. We don’t know if she would have been able to, but now she is 45 we have both accepted that children for us are sadly not going to be possible.  This is also a very painful experience to have to go through, as a woman you are almost mourning that you have lost and might have been. This illness is chronic and invisible and the women who suffer are very strong and determined women who tend to cover their symptoms and carry on when inside they are really struggling. This is why it is important to raise awareness regarding this illness so that people can be more understanding of what you may be suffering on a daily basis and not be so judgmental.   

What piece of advice do you want to give readers?
The most important thing is having the right support around you, reaching out to others whether it be partners, friends or support groups when you are having a bad time.  Also, it is important to have some self-compassion and maybe not be so strong and determined. Sometimes you need to let go and just rest and do some self-care minus the guilt. You must remember that you are not this illness, you may have to modify your life, but you can still do the things you love even if not so often, and you can still be there for the people you love, but sometimes you deserve a break. When you suffer from chronic illness you appreciate the little things.

How can someone show support (awareness colors/ribbons, etc.)?
Wear a yellow ribbon for endometriosis, share information on endometriosis and promote research for a cure.

How can listeners connect with you (social media, website, etc.)?
Website: www.worryhead.com
Email: worryhead@email.com
Pinterest: https://www.pinterest.co.uk/lucjan_b/
Twitter: https://twitter.com/WorryHeadBlog
Facebook:: https://www.facebook.com/worry.head.14
Instagram: https://www.instagram.com/lucjan.b/

Take care,
💛Samantha 

Ashley Rippentrop is my next guest for the Chronic Illness Support Guest Blog! You can find information Ashley has provided about POTS (postural orthostatic tachycardia syndrome), MCAD, autoimmune issues, autonomic neuropathy, chronic migraines, daily headaches, and sleep apnea as well as some of her journey. We hope you find this information helpful in your journey with chronic illness.

Illnesses: POTS (postural orthostatic tachycardia syndrome), MCAD, autoimmune issues, autonomic neuropathy, chronic migraines, daily headaches, and sleep apnea 

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.
My name is Ashley, I’m originally from the Chicago area, but currently live in Columbia, MO and am 29 years old. I love to sing, dance, paint, write, and be in nature. My husband and I love to camp and hike and it’s our goal to visit all 59 National Parks in the US! I’m very passionate about health and helping people in their chronic illness journeys. I was diagnosed with POTS (postural orthostatic tachycardia syndrome) when I was 26 years old, but had the disorder long before, undiagnosed. From the point when I began actively trying to figure out why I was fainting so much and having all of these mysterious symptoms, it took about 6 years to reach an official POTS diagnosis.

POTS is a form of autonomic dysfunction or dysautonomia, meaning your autonomic nervous system doesn’t work as it should. Your autonomic nervous system controls things we don’t think about like breathing, heart rate, blood pressure, digestion, kidney function, and so many other involuntary things. So when this system doesn’t work properly, it creates all sorts of problems. Symptoms of POTS range from mild to severe and can include (but are not limited to) dizziness, lightheadedness, brain fog, headaches, inability to regulate temperature, blood pooling in the lower half of body, standing intolerance, chest pains, GI issues, sweating irregularities, fatigue, and tachycardia. The criteria for POTS is met when a person’s heart rate jumps at least 30 beats per minute (BPM) higher than it was upon standing and stays high. It can also be associated with unstable blood pressure as well upon standing. 

I had first heard about POTS from my friend Dallan who was talking about his friend and all these symptoms she had. I remember thinking, wow this sounds like my life. So I went home that night and researched POTS and everything seemed to click. I figured out how to get tested, made an appointment and sure enough, I had POTS. 

If after reading this, you suspect you might have POTS as well, talk to your doctor about looking into autonomic testing. Autonomic testing involves a breathing test, a sweat test and a Tilt Table Test. During a Tilt Table Study, the patient will begin lying down on a hospital bed and will stay there for 5-10 minutes, bringing their body to rest. Then the patient will be tilted to an upright position for about 10 minutes and the doctor will monitor their heart rate and blood pressure. If there is an increase of 30 BPM or more, POTS may be diagnosed. 

How long did you suffer with symptoms before you were diagnosed?
I have had some of my POTS related symptoms since I was a kid but things really began to develop when I was 14 after getting a concussion and fainting for the first time. I had suffered with symptoms for 12 + years until I got my official diagnosis at age 26.

What treatments have you tried? Did they help? Did you have side effects? Etc.
For POTS, I have tried midodrine (still on), Northera, carvedilol (also still on), fludrocortisone, salt pills, drinking 2-3 liters of water a day, electrolyte mixes, IV fluids, and bisoprolol. I had horrible side effects from Northera and bisoprolol. Midodrine and carvedilol help me the most medication wise and I really have minimal to no side effects with them. Together, they help prevent fainting episodes and control my heart rate and blood pressure fairly well so for that I am thankful. I also drink a ton of water (2-3 liters daily) so mixing in electrolyte packets helps me with maintaining a base level of hydration. Liquid IV, Normalyte, and Banana Bag are my favorite. 

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.)?
Hard to name just five because there are plenty more, but I would say my faith in Christ, singing, memes/humor about my illness, Grey’s Anatomy, and nature. 
 
Do you have other illnesses? If so, would you like to mention them? What are they?
Yes. I have an underlying autoimmune disease (suspected Sjogren’s) that is likely causing my POTS. I also have MCAS (mast cell activation syndrome), autonomic neuropathy, chronic migraines, daily persistent headaches, sleep apnea, and a few other things. 
 
What is something you wish you would have known when you were diagnosed?
That POTS is rarely ever just POTS and it’s important to search for a root cause and other comorbidities (or associated conditions). Dysautonomia International has a good list of potential root causes and/or associated conditions here. Some of these include Ehlers Danlos Syndrome, mast cell activation disorder, lupus, amyloidosis, sjogrens, and a multitude of other things. It’s so important to look for a root cause because that can help you better target treatment. If you’re able to find something causing the POTS, and if it is treatable, then by treating the root, you may, in turn, help your POTS symptoms improve as well. 

How does it affect your daily life?
There isn’t a day where I don’t have to think about this condition. It affects the way I plan and my ability to commit to things. It also affects traveling, my ability to drive, my stamina to exercise, and my ability to work. I always need to know if there is seating, what the temperature will be like if an event is outside, if there is access to water, etc. One of my most inconvenient symptoms is my standing intolerance and blood pooling. I usually get 5-10 minutes before I’m really not feeling good and need to sit or lie down and that’s with me bouncing a bit and making sure I’m pumping blood up to my brain. Standing room only situations like cocktail parties that often precede weddings are tough for us POTSies and I end up having to bring a portable stool or something to make sure I can sit when I need to. I get overheated very easily and my body does not sweat properly so it has trouble cooling itself. I bring spritz bottles of cool water with me on walks in the Summer and I keep a section of our freezer stocked with cooling aids. My headaches are constant and the migraines are often so I also use headache hats and ice packs to help my head pain. Bad migraine days coupled with bad brain fog affect my ability to drive and to do much in general. The heat and humidity makes my tachycardia go nuts, the bright sun and heat brings about migraines, fatigue and dehydration, and extreme temperatures flare up my neuropathy. All of these symptoms have impacted my ability to work a typical job so I have had to get creative and thankfully, I have figured out some things I can still do and am navigating a new career path currently.
I try to take each day and each hour as it comes, having some things up my sleeve to counteract my body’s reactions to things. I have learned to listen to my body and to give it rest when it needs it, or it will make me rest. I try to keep an active lifestyle and get exercise when I’m able, but some days are just “bed days” and I’ve learned to be okay with that too. 
  
How are you doing now with symptoms etc.?
I still have symptoms every day which vary from tolerable to severe. Each day and each hour is different. My fainting and heart rate are fairly well managed, but my headaches and migraines are still something I really struggle with. There’s usually 2-3 symptoms each day that fight for that top spot of worst symptoms (ex: one day it could be migraine, brain fog and fatigue while another day it could be chest pains, mast cell reactions and GI issues). Regardless, there are always a few symptoms at the forefront. I have found some ways to better manage and am on a decent daily regimen. Finding out other illnesses I had along with POTS helped immensely in terms of improving my treatment plan. Working from home, where I have the flexibility to lie down whenever needed or rock my ice caps for my headaches, has been huge. I’m currently in the process of getting a new, promising treatment approved for my autoimmune issues so I’m hoping that will be a game changer. 
 
Is there any other information you would like us to know about your illness?
POTS is not rare, but is not well known and still needs so much more awareness and research. 
There are currently no FDA approved medications used to treat POTS, hence why we need more research.
It is typically not life threatening, but is life altering. 
 
What piece of advice do you want to give readers?
Just because someone looks fine, doesn’t mean they are. We should be quicker to seek to understand than to criticize or judge. Be patient with yourself and give yourself grace and the space to rest. 
 
How can someone show support (awareness colors/ribbons, etc.)?
The awareness color for POTS/Dysautonomia is turquoise and the month of October is awareness month! You can show your support by learning more about this condition and donating to the POTS research fund (CurePOTS.org). There are some annual fundraisers and races including Race to Beat POTS in Philadelphia and the Boston POTS Walk, held in Massachusetts. Visit Dysautonomia International to learn more.
Additionally - my husband and I have been working on a documentary about POTS for the last couple of years (trailer out August 18th). It is our hope that with our film, we can help raise more awareness about POTS, encourage more doctors to specialize in these types of disorders, raise research funds for POTS, and help other POTS sufferers not feel alone. You can follow my Instagram for updates on that to show your support! 
 
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Readers are welcome to email me with any questions they might have about what I said or how to get diagnosed with POTS. 
Email: ashleyhartman3@gmail.com
Blog: www.morespoonsplease.com
FB: Ashley Rippentrop
Instagram: ashley_rippentrop
Twitter: @ashrippentrop

Take care,
💛Samantha

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

Illness: Bronchiectasis (BE)

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.
Bronchiectasis (pronounced bron-key-eck-ta-sis) also known as BE, is the scarring of the bronchial tubes in the lungs. This scarring causes the airway passages to become enlarged, stretched out, and ineffective in clearing mucus. Over time, these pockets fill with harmful bacteria, viruses and other pathogens that can cause more pulmonary disease. 

Some people get BE from underlying genetic diseases such as Cystic Fibrosis, Alpha-1 Antitrypsin Deficiency (A1AD) or Primary Ciliary Dyskinesia (PCD). Others acquire it from COPD as well as bacterial and viral illnesses. And, approximately forty percent of those with BE have no idea where they got it. I’m afraid that post-COVID, we are going to see a worldwide increase in the number of people who suffer from this chronic illness.

My pulmonologist thinks that I probably got BE from gardening! I now live in New York City but from 2004-2012, I lived in Woodstock, New York. I had a huge flower garden and spread a lot of mulch. MAC, a common bacteria that is prevalent in soil, found its way into my lungs. With bronchiectasis and MAC, it is a matter of which came first the chicken or the egg. But regardless, together they can wreak havoc on your lungs. 

How long did you suffer with symptoms before you were diagnosed?
In 2016 I got a cold and then had a lingering cough. I didn’t worry about it much, but after a couple of months, it was interfering with my life. I wasn’t sleeping well, and I was afraid to go to the movies or eat out because of my annoying cough. I went to my primary care doctor and she thought it might be acid reflux. She gave me medication to reduce my stomach acid so that it wouldn’t come up my throat and cause me to cough.

I also made some lifestyle modifications to prevent reflux including changing my diet, not eating before bedtime and sleeping with my head elevated. Nothing worked and when I finally returned to my doctor in the fall of 2017, she ordered a CT Scan. The scan showed bronchiectasis and the probability of MAC bacteria. I then had a bronchoscopy, a diagnostic test whereby a camera is inserted into your bronchi and samples of mucus are taken for analysis. 

What treatments have you tried? Did they help? Did you have side effects? Etc.
MAC is a very slow growing bacteria and I had to wait two months for my tests to come back. The results were positive for MAC and my doctor gave me an airway clearance device called an Aerobika. This device doesn’t dispense any medication but instead creates vibrations in your chest to help break up mucus so that you can expectorate it. I used it but I wasn’t able to bring up much. The good news is that my cough went away! I was thrilled to be able to go to the movies and exercise classes again without having to worry about disturbing others with my cough.

I stopped using the Aerobika thinking that because my cough disappeared, my problem was resolved. Three months later when I had another CT scan, I was disheartened to hear that my bronchiectasis had not improved, in fact it had worsened a bit. 

At that point the doctor explained that I should not have stopped doing airway clearance. My condition was permanent and trying to get mucus out of my lungs was going to be a lifelong need. He suggested that we try to get rid of the MAC by starting three different antibiotics for a period of at least a year. I was shocked that he was suggesting such a harsh treatment when I was feeling so good. When he further stated that even if we were to knock out the MAC, there was a fifty percent chance that it would return, I said that I would think about it.

I knew how sick I get on antibiotics and could not imagine taking three of them for a year with possible side effects being nausea, ringing in the ears, hearing loss, vision impairment and anorexia. Fortunately, I found a support group in New York City and started attending meetings. It was interesting to see that many of the attendees were over sixty, just like me. They often talked about nebulizing saline (breathing in a salt mist) along with using the Aerobika. My doctor never mentioned nebulizing so I emailed him and asked for a prescription. Wow--what a game-changer! Finally, I was able to cough up some of the stuff in my lungs. I read more and more and added other airway clearance practices including postural drainage and lots of stretching and exercise.

I decided that I needed to find a new doctor and got a couple of recommendations from the support group. The doctor I chose is the top in her field and she immediately sent me for tests to see if I had any allergies and whether I had any underlying genetic conditions. Everything came back negative and because I was feeling great, we decided on a plan of regular monitoring without any medication. I also took it upon myself to research supportive alternative medicine options. I discovered energy work called Jin Shin Jyutsu and do a self-care routine everyday to boost my immunity and decrease inflammation in my body. I also meditate and have improved my sleeping habits so that I get better rest.  

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.)?
The five must-haves that I can’t live without are my Aerobika and nebulizing devices, a good movie to watch while doing my airway clearance, comfy sneakers for all the exercise I do and a book to read before going to bed. 

Do you have other illnesses? If so, would you like to mention them? What are they?
I also have Irritable Bowel Syndrome and find that the breathing and relaxation exercises that help me with bronchiectasis, also help with my digestive issues.  

What is something you wish you would have known when you were diagnosed?
That it is chronic but along with seeing a medical team, BE can be managed with breathing practices, exercise, airway clearance, meditation, rest, good sleep and a sense of humor.

How does it affect your daily life?
I have to prioritize exercise and airway clearance on a daily basis. I try to exercise in the morning, do clearance in the afternoon and then sometimes a second time in the evening. I also eat a mainly vegetarian diet with very few prepared or processed foods, so there is a lot of planning, shopping and cooking. I don’t really enjoy cooking but, because I am so fussy about what I eat, I am trying to embrace it. I have a lot of energy in the morning so often that is when I cook.

I take certain precautions because of my MAC infection. It is generally believed that additional exposure to MAC in water should be limited. This means I need to boil drinking water, take very quick showers, change showerheads monthly and stay out of hot tubs and pools.  I am currently sheltering in place in California and the temperatures here in the desert have been hovering around a hundred degrees. The pool at the end of our street looks so inviting but I’m trying to not take a plunge!

How are you doing now with symptoms etc.?
Really well. I always led a healthy lifestyle but I have fine-tuned it. I feel great, have lots of energy and am positive-minded. 

Is there any other information you would like us to know about your illness?
Some people with bronchiectasis are under the assumption that it is curable. It is not. Scarred lungs are permanent. But early detection and a commitment to self-care can make a world of difference. 

What piece of advice do you want to give readers?
There are many people with advanced cases of BE because in the past, the medical community was not well-informed about the condition. Now that there is more physician education and an increase in the use of CT scans (bronchiectasis is rarely picked up on x-rays), people are being diagnosed sooner. When we are diagnosed early on, we have the possibility of slowing the progression of the disease with daily management.
People who have COPD, asthma and genetic lung diseases might want to ask their doctors about bronchiectasis and see if a CT scan could be ordered. It is also important to have the scan read by expert radiologists as BE is often missed. In other words, advocate for your lung health!

How can someone show support (awareness colors/ribbons, etc.)?
I believe the ribbon is blue.  

How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Website: https://www.LetsBeClearToday.com 
Instagram: @BEClearwithBronchiectasis
Facebook: https://www.facebook.com/BEClearToday/
Twitter: @becleartoday

Take care,
💛Samantha

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

Illness: Endometriosis, Adenomyosis, Interstitial Cystitis, Adrenal insufficiency/Cushing’s disease

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.
My name is Caitlin, I’m 29 and from Boston, MA. Some of my favorite things include watching horror movies, traveling, spending time with my family, and my pets. I was diagnosed with Endometriosis at age 17, when I quickly learned that what I thought were normal things everyone felt was due to a chronic illness. At that time, I also didn’t feel fully prepared for what life as chronically ill would look like. I was told that things would be fine as long as I had surgery and took medication. Unfortunately my illnesses, although invisible, have had a significant impact on my life and functioning. I’ve had to medically withdraw from college a few weeks in, defer my admission to graduate school, and pass on other opportunities. It’s also been very isolating. Since I was a teenager, I’ve found so much support and a community through social media. I’ve been blogging since I was around 14 years old which has always been my outlet. Since that time, I’ve been diagnosed with multiple pelvic pain and musculoskeletal conditions. I also was diagnosed with a pituitary tumor from a rare disease called Cushing's four years ago. I’ve had 6 abdominal (laparoscopic) surgeries, a brain surgery, jaw surgery and many other procedures. I lost my left ovary due to misdiagnosis of torsion almost three years ago, and had a really difficult time. For the last three or so years, I’ve been working on healing my physical and mental health. 

I learned at a young age that I needed to be my own advocate, and that all of the information I was being told was not necessarily fact or “end all be all” as I had been taught. It hasn’t been an easy journey, but I’ve learned a lot. 

How long did you suffer with symptoms before you were diagnosed?
I remember always feeling very uncomfortable and sick when my period was coming, since my first one at age 12. I was diagnosed five years later with Endometriosis. My mom first suggested we bring up how sick my periods made me when I was 15 years old. I knew something else was wrong other than endometriosis when I was 21 and was having very different pelvic pain, and I was diagnosed with possible adenomyosis around age 22, which then was confirmed by MRI at age 24. My interstitial cystitis diagnosis was made during one of my surgeries for Endometriosis at age 22 as well.  I was diagnosed with Cushing's Disease at age 25, after symptoms for four and a half years. 

What treatments have you tried? Did they help? Did you have side effects? Etc.
It feels like I’ve tried almost everything! From western medicine to holistic remedies as well. 

I was on continuous birth control for five years, which means I did not have my period at all due to the medication. It helped significantly basically until it no longer did. After some time, I developed headaches that would cause vomiting episodes which became frequent. Not only was this miserable, it was also causing me issues with work and school. Additionally I tried other forms of birth control including the IUD and NuvaRing. I’ve tried a variety of medications (oral, patches, suppositories) for my symptoms. I have been in some form of physical therapy (including pelvic floor specific and aqua therapy) for years. I’ve had some more invasive treatments such as sacroiliac joint injections and nerve blocks into my pelvis and pelvic floor as well. Lastly, I've tried alternative treatments such as cupping, acupuncture, dietary changes, supplements, CBD, meditation, heat, and ice. I’ve also most recently had a lidocaine infusion, and bladder instillations (infusion of medications into the bladder).
 
Many of the medications have had side effects, especially the hormones. I wasn’t pain free while on hormone therapy but my pain was much lower. Many of the medications we have tried for pain or other symptom management have caused some side effects such as nausea and fatigue. Quite a few things I’ve tried just have not worked, which is so frustrating. 

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.)?
This is such a great question! I love hearing others’ must haves. Mine are definitely my heating pad (I have multiple so I can bring it to travel, or have a back up), the bath tub, music, my dogs and some form of CBD.

Do you have other illnesses? If so, would you like to mention them? What are they?
I have endometriosis, adenomyosis, interstitial cystitis, Cushing’s Ddsease (which is in remission since surgery, and I did have issues with Adrenal Insufficiency postoperatively, which thankfully resolved), ovarian torsion (not necessarily an “illness,” but I did lose my ovary), pelvic floor dysfunction, chronic fatigue syndrome, migraines, and some other musculoskeletal issues (mainly related to my back/spine, hips and pelvis - it would be too lengthy to write it all out).

What is something you wish you would have known when you were diagnosed?
I wish I would have known that I wasn’t alone. It was extremely isolating and confusing being diagnosed with a chronic illness as a teenager, especially a pelvic pain condition. I didn’t know of anyone that was my age who had a similar chronic illness. I didn’t know how to talk about it for a while. I was not sure what to expect. I was in denial that I was chronically ill,  which is a normal response to such a life changing event. I wish that I had a mentor at the time. It would have really helped to have support for not only myself, but my family as well. They were also adjusting to this life change. I had a really hard time, and I wasn’t prepared for the toll that this was going to take on my life in every aspect. I had to medically withdraw from college during my first semester and transfer schools due to a severe flare. If I had been prepared for that, then I possibly could’ve considered alternative options.

How does it affect your daily life?
Everyday I wake up with chronic pain and fatigue, regardless of what I do or do not do. I struggle with daily symptoms such as bladder pain, muscle spasms, and brain fog as well. There’s a lot more that goes into living with a chronic illness.  Something else that others may not realize is how you need to plan ahead, and walk through what each day is going to look like. Constantly weighing the pros and cons for things that others may not take more than a second to consider.

How are you doing now with symptoms etc.?
I’m doing alright- I’ve had a hard time for the last year with managing my pain, fatigue, insomnia and weakness.  I’d say things are definitely improving! It’s been very overwhelming and frustrating but I’m hopeful that I’ve found a good regimen. I’ve also been in physical therapy for the last three months and have made significant progress especially with my back pain, which is exciting. I still have high pain days, but have reduced some of the issues I was having such as vomiting from pain. 

I am often asked if I’m pain free since having a hysterectomy for Adenomyosis and other treatments for my chronic diseases. The thing is, these diseases are whole body diseases. There are long term effects to chronic pain such as the toll it takes on the central nervous system (central sensitization). Unfortunately, it isn’t as simple as having surgery and removing the uterus. I have other health issues, and am still working hard to build up my strength. There is a lot of healing to do!
 
Is there any other information you would like us to know about your illness?
I have been working on a social media campaign to discuss the myths that exist for endometriosis and adenomyosis specifically. One of the most important things is that not every person will have every symptom of a specific illness. Not everyone will fit the text book diagnosis. I see a lot of information shared about the staging system and endometriosis. What stage endometriosis someone is classified as does not correlate with pain. 

What piece of advice do you want to give readers?
Do not give up on yourself. You know your body best. Invisible illnesses are very complex, and affect more than the associated organ or body part(s). If you are told you are fine, tests are not ordered, or a plan is not created - seek another opinion. Do your own research (with caution: only the most negative things are typically posted online, and not everything is factual, accurate information regardless of how it is presented). Keep a journal to track your symptoms and any trends. 

Also: There are amazing organizations even for rare/complex illnesses such as NORD (National Organization for Rare Diseases), which was such a great resource for me when I learned I had abnormally high cortisol, which lead to my diagnosis of Cyclical Cushing’s Disease. 

How can someone show support (awareness colors/ribbons, etc.)?
Endometriosis : yellow + Center for Endometriosis Care centerforendocare.com, Endopaedia : endopaedia.info, Vital Health Endo Center :vitalhealth.com

Adenomyosis : purple : endopaedia.info, centerforendocare.com

Interstitial cystitis : yellow : ichelp.org
 
Cushings Disease/brain tumor : grey , Cushing’s Support and Research Foundation: https://csrf.net/ & Brain Tumor Foundation braintumorfoundation.org
 
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Instagram: @chronicallystill
Facebook (under construction!): @chronicallystill
Website/blog: www.chronicallystill.org (under construction!)
Twitter: @chronicallycait 

Take care,
💛Samantha ​

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

Illness: Endometriosis 

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.
My name is Laura Padgett. I live in Columbus, Ohio with my husband, daughter and two dogs. I have spent most of my professional career working in public policy in state government here in Ohio, and I’m also a life coach. I love supporting others in taking charge of their own lives in order to live their best life! 

I was diagnosed with Endometriosis when I was 23. I had suffered from extremely painful periods and other symptoms since I was around 13, however I thought most of that was just “normal” for women to go through each month. In my early 20’s, however, my doctor discovered a strange mass on one of my ovaries, and recommended surgery. At that time, I was diagnosed with severe stage IV endometriosis. My life turned upside down! What is this crazy disease? I had so many questions swirling, and I felt pretty helpless as to how to move forward and take care of myself during this time. 

Endometriosis, as I learned, is a disease that causes tissue that is similar to the endometrial lining of the uterus to grow in all sorts of places in the body. I had endometriosis on my uterus, tubes, ovaries (along with endometriomas - a kind of cyst), peritoneum - all over my pelvic region, basically. It affected my bowel and bladder functions, as well as my menstrual cycle. I had severe pain with ovulation and menstruation, that radiated down my legs and across my back. It affected my fertility, sexual function, my moods, and everything about me, really. 

How long did you suffer with symptoms before you were diagnosed?
I had symptoms for nearly 10 years before I received a definitive diagnosis. I had seen a couple of doctors complaining of my pain prior to diagnosis. I felt like I was just dismissed, laughed off, and offered birth control pills to help manage things. It was rather traumatic, really, looking back on those early visits! 

What treatments have you tried? Did they help? Did you have side effects? Etc.
I have tried so many different treatments, with varying success, and loads of side effects! 

When I was 23 and 24, I had two ineffective surgeries, that may have actually caused more harm than good with the proliferation of scar tissue and adhesions that followed. I spent a year on Lupron, that threw my body into a state of menopause. This was a pretty miserable year - not only were the menopause side effects rough, but it also took quite a toll on my mental and emotional health. After Lupron, I embarked on a series of birth control...shots, pills, rings… with a lot of side effects as well. The worst for me was nausea and recurring, hard to treat yeast infections. I also became quite depressed after several months on the pill. While it did help some of my symptoms, especially when I took them continuously so that I didn’t have a period, I still had daily pain and pressure in my lower abdomen. 

Several years later, I discovered some research on excision surgeries and read about the Center for Endometriosis Care in Atlanta. I sent in my records for review, and traveled from Ohio to Atlanta for 2 more surgeries when I was in my early 30’s. These were extensive surgeries: the first excised endo and and the second dealt with severe adhesions. 

Around this time, I also discovered pelvic floor physical therapy. I had never heard of this before and had to request a referral from my doctor at the time. It was extremely helpful in managing the muscular pain in my pelvic region caused by so many years of extreme pain. When I was 38, I made the final decision to have a hysterectomy. My uterus was a mess of adenomyosis, endometriosis, fibroids, and adhesions. It looked like a lumpy pocked-marked alien creature, rather than the smooth pink tissue of a healthy uterus. Immediately upon waking up from this surgery, I noticed a significant difference! The heavy pressure and pain in my pelvis was not there! What a crazy and amazing feeling! A year later, I went back to have my ovaries removed as well, due to recurring and rupturing cysts. I’ve been on low-dose estrogen patches now for a couple of years. 
I also see a therapist, do yoga, and meditate - these things have been vital to my healing process.
 
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.)?
I’ve coped by finding good care and support - taking charge of my health and standing up for myself has been transformative for me! I attend group therapy with some amazing women who have been my rocks over the past few years. 

I pray and meditate. I’ve developed my own sort of meditation for pain, probably adapted and borrowed from some others along the way. This meditation includes noticing the pain, acknowledging the pain, and allowing the pain to be. Often pain will dissipate and my body and muscles will relax enough to provide relief. I have recently learned that hating my pain is hating a part of me, and hatred is not really the best place for me to look for healing. 

I love my heating pad and my hot baths - warmth is so comforting to me! I have a million colored pencils and gel pens for my coloring books - being able to focus on coloring has been a great redirect for pain and emotional distress many times!  
 
Do you have other illnesses? If so, would you like to mention them? What are they?
I have also had adenomyosis, severe abdominal adhesions, symptoms of interstitial cystitis (but was never really sure if I had it or not!), irritable bowel syndrome, and ovarian cysts.

What is something you wish you would have known when you were diagnosed?
I wish I would have known that nobody knows my body better than me - that I can trust myself, and that I’m allowed to say no to treatment, tests, or anything that makes me feel uncomfortable. I wish I had known that it was okay to take my time, research, and wait until I had a plan that I felt good about. I wish I had known about excision surgery much earlier in my journey and felt confident in pursuing excellent care from an endometriosis specialist, rather than just doing what my ob/gyn recommended when I was first diagnosed. 
 
How does it affect your daily life?
A few years ago, I would have answered differently than I do today. Throughout my 20’s and 30’s, I had almost daily pain, and I was almost incapacitated by severe pain. I carried a bottle of narcotic pain pills with me at all times “just in case.”  I got to a point where I only had 2-3 “good” days a month. It affected my ability to take care of myself, attend family functions, work, and do just about anything. 

How are you doing now with symptoms etc.?
Now, I still have some nagging pain almost all the time, but I put away the pain pills after my oophorectomy surgery in 2017 and haven’t looked back! I have done a lot of physical therapy - and still use many of the exercises and techniques I learned there to help with my pelvic pain. 

I also regularly see my therapist and chiropractor, do yoga, and meditate  - and I feel pretty good in general. I’m thankful for the expert surgeons and physical therapists, as well as my mental health team! 

Is there any other information you would like us to know about your illness?
Endometriosis is a total person condition - it affected me biologically, psychologically, sociologically, and spiritually in deep and challenging ways. It isn’t just “bad periods” or physical symptoms, but a whole person illness that needs whole person care and treatment. 
I have felt traumatized by well-meaning medical professionals, exams, tests, and treatments. I have felt helpless and hopeless for so many years of this struggle. I also struggled with infertility and was never able to conceive. My daughter is adopted - and she’s been an amazing addition to our little family. 

What piece of advice do you want to give readers?
I’ve been dealing with this disease for nearly 30 years at this point and it is only in the last few years that I’ve really started to feel like I was able to take charge of my health. This seems unacceptable in so many ways! I would love to be an advocate and support others to take charge and feel empowered in the face of this disease. 

My main advice would be to trust yourself! You know your body better than anyone. Find good care and support for all aspects of your health and well-being that you feel comfortable with and confident in. 
 
How can someone show support (awareness colors/ribbons, etc.)?
As you probably know by now, March is endometriosis awareness month. I would encourage you to find a march or a support event to attend, but I think most of those are canceled at this point! There are support events on social media - where you can wear yellow and show your support publicly. 

Endometriosis affects 10% (or more) people, so chances are you have someone in your family or a friend with the disease. I’d encourage people to be open to conversation about the disease and just really listen. It can be a hard disease to talk about, because of the parts of the body that are most often affected. Things like infertility and sexual function can also be really difficult to talk about. Having an open, listening, caring friend can be so meaningful and valuable. 

I’d also encourage people to try not to give advice or ask things like “have you tried…?” People mean well, and want to help...and I’m sure I have probably used this phrase myself! It can be best to remember that we’re not here to solve problems for each other, but to support and encourage and empower others.  
 
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
I’d welcome readers to connect with me on social media or through my website. You can find my contact information online at www.lprofessionalcoaching.com. I’m also on Facebook: https://www.facebook.com/LProfessionalCoaching/, and you can find me on Instagram: @LifecoachLP. 

Take care,
💛Samantha ​

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

Illness: Most of you know about endometriosis, but I also have PTSD due to 25 years of medical gaslighting. Thanks to the current standards of care <eye roll>, I also have osteoporosis. I do not know the extent of my fibromyalgia, myalgic encephalomyelitis (ME), or postural orthostatic tachycardia syndrome (POTS) due to the duration of medical neglect and lack of sufficient diagnostic protocols. I take one flare at a time.
 
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.
Endometriosis is a full-body disease of inflammation that attacks our organs and nervous system; the traumatic pain affects our mental health, and the prolonged lack of care leads to additional irreversible health complications including cardiovascular. Patient advocates also have to navigate the American College of Obstetricians and Gynecologists (ACOGs) propaganda, so the wall of medical gaslighting is a huge part of the experience since childhood. Unfortunately the trauma, stigma, and shame can be passed down through generations and reinforced through school institutions, so we must be vigilant to self-advocate against gender abuses and seek care elsewhere than from those society tells us to trust. Isolation and misinformation is one of our biggest hurdles. It’s why we have an uprising against the status quo, and a growing movement of informed activists.

I live in California. I’m the founder of FemTruth Policy CA, an inclusive, grassroots Coalition of patient advocates representing endometriosis, adenomyosis, polycystic ovary syndrome (PCOS), interstitial cystitis (IC), premenstrual dysphoric disorder (PMDD), uterine fibroids, post-traumatic stress disorder (PTSD), and adverse childhood experiences (ACEs), with a mission for policy reform of public health standards and (and within) educational institutions.
 
How long did you suffer with symptoms before you were diagnosed? 
This is challenging to answer, depending on diagnosis, minimum of 25 years. Some diagnoses will not be realized in my lifetime unless women’s health is prioritized, ICD medical coding is updated, research is funded, and doctors are educated. And that would take a huge act of social justice to remove industry from influence.

What treatments have you tried? Did they help? Did you have side effects? Etc.
This is a controversial question for me to answer because I truly respect everyone’s opinion on what works for their body, and none of us can judge or preach. For me personally, infertility led me to ablation which propelled me from stage 2 to stage 4. I lived at stage 4, entirely disabled until finally granted a botched hysterectomy, which eventually led to an expert excision about five years ago. I healed in mostly bedrest and focused selfcare for more than a year following that surgery. After many trials and errors, I now try to adhere to a holistic wellness program of supplements (https://quanamccraw.lifevantage.com/), writing, yoga, cognitive behavioral therapy, Mayan abdominal massage, CBD, an anti-inflammatory diet, conch and daith piercings, and I dance as often as possible! Another huge shift was eliminating as many endocrine disruptors from my lifestyle, for example, two years #nopoo movement.
 
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.)?
My phone and charger!!! I am always writing and reading!
My heating pad
My fluffy (it’s a skin thing, our communities get this one!)
My Boston Terriers
My Epsom Salt baths
 
Do you have other illnesses? If so, would you like to mention them? What are they?
Endometriosis 
Post traumatic stress disorder
Osteoporosis
Infertility
ME/Fibromyalgia/POTS (undiagnosed)
 
What is something you wish you would have known when you were diagnosed?
That pain (and passing out) isn’t normal, and that untreated will lead to permanent disability. To trust my instinct in times of gaslighting and to move on without hesitation from toxic situations. Being an empath is a superpower.

How does it affect your daily life?
I can no longer lead the life I led or planned to lead. I live in a new world of adversity, ableism and advocacy. 
 
How are you doing now with symptoms etc.?
I am very grateful to be living my best life, I am at peace with it.

Is there any other information you would like us to know about your illness?
In struggling to find a language to communicate, I found my voice. Don’t settle for less than 100% authenticity. You deserve it. Your story isn’t over, live your best one because it’s all yours to live.

What piece of advice do you want to give readers?
Read as much as you can! Read my books, read Samantha’s. Read Bloomin’ Uterus articles, read Maya Dusenbery, read Gabrielle Jackson, read Nancy Petersen, read Heather Guidone. The higher your patient IQ, the faster you are to quality care and wellness. Validation in others stories ends isolation and deepens our understanding of the intersectional oppression Endometriosis brings our community; books are our lifelines. In everything you read, always question the author, check references and do your own research to develop critical thinking. But whatever you do, keep reading!
 
How can someone show support (awareness colors/ribbons, etc.)?
Buy merch from Endometriosis patient advocates, and know where your money is going. Support our community and share patient-advocate resources. Besides books we have advocacy tees, mine are sold exclusively through our endosister Elissa Harvey: https://www.facebook.com/elissa.cortinas, with the question… Do you know the difference between menstruation and Endometriosis? Ask me. The front of the tee reads: Endometriosis Patient Advocate (see pic above). We have so many tools now to stand in solidarity. Our voice is getting louder. 
Currently the most impactful way for Californians to get involved is to take this survey to make sure their voice is included. We have a lot of momentum here, it’s an exciting time. 
In general though, show support by believing someone, just listening and having empathy is huge. You now know about resources, buy them for someone in need. See beyond the “I’m fine” because someone you know is definitely NOT fine and in need of support.
Don’t buy into the “my doctor said mine is the worse ever” - unless your doctor is an excision specialist, this is trite. We are all suffering, ask an expert, they see “the worse ever” case after case after case. No one deserves to suffer, we are in this together enduring an assault to our bodies rated amongst the top 20 MOST painful symptoms by the NHS, and then told we are imagining the pain. 
The universal thread is that we are not in competition of trauma, but stand together in compassion of trauma, all wearing masks to protect those we love and the lives we are at risk of losing. Whenever one person speaks up, it lessens the burden for the next. #FemTruth

How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Website: https://www.SilviaYoung.com 
Facebook @FemTruth: https://www.facebook.com/MyFemTruth/ 
Facebook @Silvia Wheatley Young: https://www.facebook.com/silvia.w.young
Facebook @UniteEndo: https://www.facebook.com/uniteendo/
Instagram: @Fem_Truth
Twitter: @SlySerenity
#FemTruth
#FemTruthPolicyCA
#FemTruthFlo

Take care,
💛Samantha ​