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 2017 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 2018, 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 ​

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

Topic: Multiple pain generators
​
Tell us a little bit about yourself:
Amy is an artist by day and a graduate student by night. She has been married for almost a decade to her husband Dan and has two children. She is passionate about helping create awareness and knowledge for endometriosis, which she personally has had for several years, and for chiari malformation, a condition her daughter was diagnosed with in 2014. She is working on becoming a mental health therapist, hoping to work with people coping with chronic illness.

Types of multiple pain generator illnesses (there is an x by the illnesses Amy has):
Endometriosis x
Polycystic Ovary Syndrome x
Irritable Bowel Syndrome x
Crohn’s Disease
Celiac Disease
Adenomyosis x
Interstitial Cystitis
Fibromyalgia
Kidney stones
Pelvic Floor Dysfunction x
Hip Impingement x
Labral Tear x
Occult Inguinal Hernia x
Pelvic Congestion Syndrome x
Small nerve fiber neuropathy x
unspecified autoimmune disorder x

What piece of advice do you have for readers about multiple pain generators?
I am a person who lives with multiple pelvic pain generators. I am a non-medical professional, who has been coping with chronic pain for the last ten years. My medical odyssey started a few years ago when my pain disrupted all aspects of my life. In my younger years, pain played a part, but it was not constant. Pain would rear its ugly head for many days of the month, but I did have pain free days. As an adult, the pain free days became less and less. And then suddenly, there were no pain free days.

So began the endless shuffles between multiple doctors. Some doctors, through no fault of their own, shrugged their shoulders and referred me onto someone else. Most doctors truly wanted to help, but they didn’t know how. Some doctors were less than kind and made my pain worse.

​It took years to receive the correct diagnoses. Eventually, I would receive several diagnoses, each plays a part in my pain. When I saw one doctor, who gave me all the possibilities of what my pain could be, I remember her saying “or it could be all of them”. I never imagined all the possibilities she gave me for my pain would actually be what was causing my pain.

I view my chronic pain as Horcruxes, a term coined by author JK Rowling in the Harry Potter series. A horcrux is a dark magical spell that puts a part of one’s soul into an object, so that one can never die. In the Harry Potter series, most of the latter books are spent looking for and destroying these elusive horcruxes. As someone with chronic illness, it sometimes feels like we are looking for horcruxes, blindly going after clues and hoping that it indeed leads towards relief and respite. Sometimes, when we figure out one of our horcruxes, it ends up being an incidental one, one that doesn’t really help things, but it’s good to know we took care of it. Other times, it is one of the important ones and it brings significant relief. This can lead to a multitude of procedures and therapies. The question remains: what to do when you are coping with multiple pain generators?

This is something I myself have searched for, many times. I kept trying to figure out on my own. Like, what was causing my pain? What can I be doing to change it? Often, I would find myself to be incredibly frustrated with not only my inability to figure out the pain, but my doctor’s as well. It was not until the last 3 years that I started receiving proper care for my conditions.

Looking at chronic pelvic pain, one must understand that often there isn’t just one cause for pelvic pain. There are so many systems in the pelvis and for that, our bodies may have a hard time interpreting the pain messages going on. There can be a lot of overlap in terms of where pain is and what type of pain is felt. Many times, I have had doctors blame my pain on my endometriosis, when in reality, it was a hip issue, and I have had other pains and conditions be blamed, when in reality it was endometriosis and adenomyosis.

With having both adenomyosis and endometriosis, it was hard to tell what was causing more pain. Both caused its own special brand of misery. Both conditions caused pain at all times of the month. Both caused pain during intimacy as well. But, for me, adenomyosis made me absolutely bed-ridden. I was unable to function when I had a uterus (and eventually a uterine remnant after I had my partial hysterectomy). It wasn’t until I had the cervix taken out that I saw a difference in some of my pelvic pain. Once my uterus and cervical stump were removed, it was clear a good portion of my continued pelvic pain was coming from endometriosis, which lead me to eventually pursue excision surgery. Eventually, it would be discovered I had other issues as well, nerve damage, pelvic floor dysfunction, a hip impingement and labral tear, and occult hernias. All of these issues caused pelvic pain, but there was such an overlap of symptoms, it made it incredibly difficult to find why I was having pain.
How did I figure all this out? Just like multi-factorial pelvic pain, there is not just one way to “figure it out”. There are multiple (ba-dum-ch) ways to figure out multiple pelvic pain generators.

Symptom Journaling:
Having multiple diagnoses, it is important to know our bodies. We need to have a good understanding of how our minds and bodies work. We have to be aware of how we manage our stress, how we manage our day-to-day living, and our triggers for pain. Symptom journaling can be an incredibly valuable asset. By noting when pain is occurring, one can look at pain patterns on paper. Looking at pain on paper can help note if there are dietary triggers, event triggers like intercourse, physical activity, menstruation, or even stress reactions.

Looking at Oneself Holistically:
The concept of holistic has a bad rap for being crunch or natural medicine only. In reality, holistic is a concept that refers to looking at the whole person experience. Our lives do not exist in a bubble. What we do and who we are blends into other parts of our lives. Symptom journaling can encourage a holistic view of self. It helps foster an awareness of our lives. Are we too stressed? Is our diet contributing to pain?
We have a lot of organs, guts, muscles, nerves, ligaments, tendons, and bones in our body. When one is in dysfunction, it can create a chain reaction within our body. Many people with endometriosis, for example, also suffer from adenomyosis. Many who suffer with these also suffer from pelvic floor dysfunction. Conditions like interstitial cystitis and irritable bowel syndrome can be comorbidities associated with endometriosis. When the pelvic floor is in spasm, it can put a taxing amount of stress on the other muscles within the body, creating even more pain. And for those with fibromyalgia, the intensity of pain can be triggered by weather fluctuations.

Seeing a specialist and having a good medical team:
Even Harry Potter did not defeat Voldemort completely on his own; others were with him on the journey to find and destroy the horcruxes. Truth be told friends, I know this one sounds like a no-brainer. But the reality of it is, with complex conditions, a run of the mill doctor may not be the right fit. While they may be great at the everyday scenarios, many doctors are not equipped to handle difficult diseases like endometriosis, occult hernias, or nerve damage.

The other caviet to seeing a specialist is having one that plays well with others. Communication with other medical professionals is key. There are a plethora of medical professionals who are incredibly talented within their specialty, but every specialist is not equipped to deal with every single problem. Afterall, we wouldn’t want a dermatologist trying to treat a brain hemorrhage.

For example, in the endometriosis world, there are lots of great doctors, who are trained in the gold-standard of excision. However, even in the best of hands, pain can still persist. In my own experience, I had pain after endometriosis excision surgery. In my eyes, my doctor is the best of the best. He has always had my quality of life in mind and taken into consideration my health goals. My doctor very wisely sent me to two additional doctors. At first, I was frustrated, because after being shuffled so many times around, I didn’t want to add another doctor to the team. But this time, I was pleasantly surprised. One was a pelvic floor physical therapist and the other a pelvic pain physiatrist. These were not ordinary doctors I was referred to. These were doctors that COMMUNICATED.

The three doctors were able to converse on my case, share their observations, and together help lead me in the right direction. The pelvic floor physical therapist helped me cope with a mighty pelvic floor dysfunction I ended up with after years of having endometriosis and adenomyosis. She also was able to help me figure out that my posture and hips were contributing to my long-standing pelvic pain as well. I never knew before going to pelvic floor physical therapy that my range of motion was incredibly limited and was affecting how long I could sit, stand, or even walk. The pelvic pain physiatrist, especially since she was so well versed in pelvic pain, was also able to help recognize symptoms of a hernia and affirm that the hip was a source of pain via injections and imaging.The pelvic pain physiatrist was able to refer me to the appropriate hip surgeon and to a hernia surgeon for a consult.

See the best doctor for your situation. Be picky. Ask questions. Make lists. Symptom track. Ask how doctors deal with complex patients. These questions and tips may save a lot of time and energy.

A Good Support System

Our support system matters. When we have people in our corner, we have people to advocate on our behalf and want what is best for us. They are there to share the joy we have and also bear the pain we have. Those within our support system cheer us on and are present for us. Support systems come in many forms. From partners to parents, to friends to therapists; each of these support system members can help foster within us a sense of resilience, to keep trudging on when things are hard and to be our voice when we are weak.
Persistence and Resilience

There is a weariness to chronic illness, especially when there are multiple and complex conditions we are coping with. There have been many times where I wanted to throw my hands up in the air (and not like I just don’t care). I saw a lot of bad doctors before I had a good medical team on my side. And the hard work didn’t end there. It took a lot of testing, symptom journaling, different medicines, surgery, and treatments to get to where I am now. Harry Potter didn’t give up when he couldn’t figure out how to destroy the horcruxes. He, Hermione and Ron continued to work at it, until they figured it out, and then began to systematically destroy the remaining horcruxes.

The worst part about pain is that it changes everything. The best thing about pain is it changes everything about you. Pain sucks. And it is so hard to cope with. But, being in chronic pain has made me resilient. I look at what I have overcome and how I continue to fight, and I am proud. I am proud of the fortitude I have. I am proud of the empathy it has helped foster within my heart. The conditions I have have helped to connect me with so many wonderful people. The pain I have experienced has moved me to make meaning out of my suffering and help advocate for better care.

While my experience is not typical and should not be used in place of medical advice, I hope what I have talked about what can help in some way. Know that if you are suffering with pain, you are seen. You are heard and your pain is real, whether you have a diagnosis or not.

You can connect with Amy on Instagram: LilyDayDreams and Facebook: Amy Lynn Di Cristo.

Take care,
💛Samantha

JoJo Higgs is my next guest for the Chronic Illness Support Guest Blog! You can find information JoJo 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.
I live in Southern Illinois, USA but was initially diagnosed in Southern California. I moved back to my home state just a few months after diagnosis. I am approaching 30 in December. I was diagnosed a month before my 23rd birthday. Only 4 years later I had a total removal of uterus, tubes, ovaries and cervix. Surgery each year escalated my endometriosis pain very, very quickly. My symptoms first started when I was 5 years old with breast pain, then 11 with first period, blood to my knees soaking jeans from just standing up in 6th grade health class.

How long did you suffer with symptoms before you were diagnosed?
Almost 20 years from 1st symptom. Daily suffering for 2 years before diagnosis.

What treatments have you tried? Did they help? Did you have side effects? Etc.
Laparoscopy each year- no relief
Lupron, Depot Provera, Mirena, Implanon, etc- no relief and terrible symptoms
Hysterectomy- quite a relief although they didn’t “find” adenomyosis.

What are five must haves that you can’t live without that help you cope with your chronic illness?
Cannabis, music, heating pad, a fluffy blanket, and a good book or coloring book to keep my mind busy but occupied

Do you have other illnesses? If so, would you like to mention them? What are they?
Endo, IC, Fibro, Sciatica, Scoliosis
I have also been diagnosed with PTSD and general anxiety disorder.

What is something you wish you would have known when you were diagnosed?
Don’t go to the ER unless you are legit dying, EVEN THEN they won’t take you seriously so you have to command the floor. And if they don’t listen… MOVE ON TO THE NEXT DOCTOR until you feel SAFE.

How does it affect your daily life?
3 years post hysterectomy and It feels like my bowels and bladder are adhered. I have daily severe bladder, bowel, and lower back pain that requires a cane, walker or wheelchair depending on the day. Other days Im able to walk without assistance but still in terrible pain. I haven’t been to a doctor for my endo since my post op.

How are you doing now with symptoms etc.?
Mentally, it is draining. Physically, it is draining. But the Endo Community is amazing and the Volunteers at Endo Crisis Connection are amazing. We are not only there for the whole community, we are great at keeping each other company and making sure no one is falling below the water.

Is there any other information you would like us to know about your illness?
Endometriosis is a full body disease that has been found to create its own nerves and hormones. Hysterectomy is not a cure for endo. Even though patient experience and community is SUPER IMPORTANT, every patient experiences endo differently than the next. Some have no pain. Some have pain only during periods. Some have excruciating pain daily. We are everything but cookie cutter.

What piece of advice do you want to give readers?
I believe you! Your pain is valid. You are valid! DON’T GIVE UP! The revolution has begun! Please hold out for the change to come. Until then, please don’t fight alone! We are always available at Endo Crisis Connection on Facebook and soon will have our own .ORG.

How can someone show support (awareness colors/ribbons, etc.)?
The Endometriosis awareness color is yellow.

How can readers connect with you (Ex. Instgram, Twitter, Facebook, Website, etc.)?
https://www.facebook.com/idnamjo
https://www.facebook.com/endometriosis.crisis.connection/

Take care,
💛Samantha

Siara Wallace is my next guest for the Chronic Illness Support Guest Blog! You can find information Siara has provided about Marfan Syndrome and Arteriovenous Malformations (AVMS) as well as some of her journey. We hope you find this information helpful in your journey with Marfan Syndrome, AVMS, and/or chronic illness. 

Illnesses: Marfan Syndrome and Arteriovenous Malformations (AVMs)

Tell us about yourself, what illness we are talking about today, when you were diagnosed, how, what led to diagnosis, etc.
I'm a mom, wife, and a certified medical assistant with a Bachelor of Science in Exercise Sport Science and a minor in Psychology. I live in SC. I am 29 years old. I have known I was "different" all my life, but I never let it stop me from achieving goals. I did pretty much start taking medicine from birth, since my parents had me watched by a cardiologist knowing I would most likely have Marfan due to my genetic predisposition.

Marfan syndrome is a genetic disorder that affects the body’s connective tissue, which is what holds all the body’s cells, organs and tissue all together. It can affect many different parts of the body but mainly the aorta in the heart. Most people affected with Marfan are very tall, slender, and flexible.

Arteriovenous malformations (AVMs) are defects in your vascular system, which is what carries blood around your body and includes arteries, veins, and capillaries. Arteries carry blood away from the heart to other organs; veins carry blood back to the heart. Capillaries connect the arteries and veins. An AVM is a big ball of arteries and veins that have no capillaries and interferes with circulation and blood delivery to your organs. 

As Marfan is a genetic disorder, my mother knew there was a chance of giving me this upon birth. My mother's side of the family has this genetic trait and I have been treated my entire life. However, in our family, it seems that each generation it gets worse and open heart surgery age is younger and younger.  I ended up having my aortic valve replaced due to aortic valve enlargement at the age of 17; my cousin's son had his at 10. My mother and her brothers were at least 33 or older when they had surgery.

Along with the connective disorder symptoms of Marfan, my family has these vascular anomalies called AVMs that can appear all over the body, but especially in brain and lungs. I recently had one embolized in my cervical spine that I will talk about more in detail later in this interview. 

How long did you suffer with symptoms before you were diagnosed?
This is where I would like to talk a little bit more in depth about my recent experience with AVMs and my emergency surgery at the end of September 2019/beginning of October 2019. 

One Sunday afternoon 4 hours before time to get off work, I started to feel really hot. This is very unusual for me because I am always very cold, which I attribute to being on blood thinners post my aortic valve replacement. I then noticed my right arm was going numb and wasn't able to raise it up very far. I started to get very worried. I then had the most excruciating pain on the right side of my head behind my ear. My coworker called 911 because we thought I was having a stroke. I was taken to a local hospital's ER who called code stroke and did some immediate imaging.  Upon looking at the images, they immediately wanted to send me to another hospital in a neighboring state that wasn't far that had a great neurology department to look at the scans. I went by ambulance to their ER and sat for hours in pain without any help. Finally after 8 hours, a Neurologist and Radiologist came in and said they thought I was having a chronic migraine and sent me home with no relief from my pain. I continued to have these episodes of pain with stroke like symptoms over and over and knew they were not just migraines and not normal, so I sought out answers from my general practitioner and my cardiologist. My GP thought I was having muscle spasms and gave me a muscle relaxer and pain medication. That night at 2am, I had the worst episode I had ever had and I screamed in pain. It scared my cop husband so much that he decided to call an ambulance and tell them to take me to another local hospital in a neighboring state. Upon arriving, the neurologist looked at my images and said I had an AVM in my cervical spine. In fact upon further inspection, the neurologist and neurosurgeon found the AVM to start in my C2 to C3 then begin  tunneling down through my spinal cord down to C7. They admitted me to the hospital and the neurosurgeon wanted to do an exploratory procedure right away called an angiography. This is where the doctor goes in through your groin with a thin plastic tube and snakes it up through vessels to where the AVM is located and puts in contrast. The doctors then can see pictures of major blood vessels supplying the AVM. The doctor can sometimes treat the AVM at the same time, which is exactly what they did during my procedure. The treatment procedure called embolization involves the injection of glue or coils into the AVM in order to block blood flow to it. I was in the OR for 8 hours. Also, keep in mind I went into this procedure being told I may come out paralyzed due to location of the AVM. When I woke up from the procedure able to move my fingers and toes, I felt so blessed. 

What treatments have you tried? Did they help? Did you have side effects?
I have lost the feeling on the right side of my body and a little trouble using my right arm and hand. That, however, should be temporary. I'm hoping to start some therapy soon. I am also hypersensitive to temperature and touch on my right arm and right side of my head.  Lastly, it is quite difficult to turn my neck due to inflammation post treatment. I also have a difficult time getting comfortable at bedtime. 

What are five must haves that you can’t live without that help you cope with your chronic illness?

1. Heating pad to place on my neck when pain sets in or feeling stiff.
2. Pillows to help with sitting up and getting comfortable in bed.
3. Seat in your shower to help with showers post surgery because you will be way too tired to stand for long periods. 
4. Copaiba essential oil is known to help with pain and is anti-inflammatory. Put it on your neck and get relief almost right away. 
5. A straw! Don't even try drinking without one at first because your neck will scream at you when you tilt it back.

How does it affect your daily life?
After my aortic valve replacement I have been doing quite well. The biggest challenge/change after the surgery was being placed on Warfarin, which is a blood thinner. The goal of Warfarin therapy is to decrease the chance of a clot forming, clotting in the blood. Someone on Warfarin has to be monitored with frequent blood tests to check INR or International Normalized Ratio. This just means how fast or slow your blood clots. Why is this difficult or important? A foreign object in your body (my mechanical valve) would be attacked by clots if INR is too low and cause excessive bleeding if too high. You also have to go on a specific diet watching the amount of vitamin K intake. Warfarin works against vitamin K because vitamin K makes your blood healthy and able to coagulate (thicken) fast. Vegetables high in vitamin K include spinach, cabbage, and broccoli. So how does my intake of vitamin K affect my Warfarin? A significant change in my intake of vitamin K can result in a significant, and potentially dangerous, change in my INR. For example, if I reduce the amount of vitamin K in my diet, my INR will increase and my potential to bleed is higher. 

How are you doing now with symptoms?
Post surgery, I am learning many lessons. Taking one day at a time. Learning patience, because my complete recovery time is not days, it is months. Learning to be humble. It is so difficult to allow someone to help me shower or get dressed at 29 years old. 

What piece of advice do you want to give readers?
#1 Do not ever give up! You know your body. If you do not receive what you feel is a proper diagnosis, then go seek care from somewhere else! If I had given up, I would hate to think what would have happened. 

#2 The most important part of living and accepting having a chronic illness or debilitating diagnosis is having a wonderful support system surrounding you. Accept their love and help when offered, no matter how big or small. Having my family and friends visiting me the night before my procedure and days following to pray and hug me gave me the hope I needed to get through that tough time. 

How can someone show support?
February is Marfan Awareness Month and The Marfan Foundation urges everyone to get educated, because awareness is critical. According to the Marfan Foundation, "There are approximately 200,000 people in the country that have Marfan or a related disorder, experts say that half are not diagnosed and are at risk of a sudden early death from a tear in their aorta". 

Burgundy is the color of AVM and Brain Aneurysm Awareness Ribbons. October is AVM and Brain Aneurysm Awareness month and the goal of the month is reaching out to people and spreading awareness with the hope of making positive differences in people's lives. 

How can readers connect with you?
Readers can find me on Facebook: Siara J. Wallace

Take care,
💛Samantha 

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

Illness: Endometriosis/adenomyosis
 
Tell us about yourself, what illness we are talking about today, when you were diagnosed, how and what led to the diagnosis, etc.
I am the founder of the Fighting Fiercely Endometriosis Awareness movement and author of Fighting Fiercely: Unveiling the Unknown about Endometriosis. I am also a patient advocate with the Chronic Disease Coalition. I was born and raised in Chicago and was 33 years old at the time of my diagnosis. I had been experiencing excruciating pain in my midback on the left side for quite some time, and after being sent to the ER for what was thought to be a ruptured appendix and an eventual 10 day hospital stay, I was finally diagnosed with stage 4 Endometriosis. As it turned out, what was thought to be the ruptured appendix, was actually a large endometrioma that had begun to press against my bladder and kidneys, causing an infection.
  
How long did you suffer from symptoms before you were diagnosed?
At the time of diagnosis, I was told that I had one of the worst cases my doctor had ever seen, and that based on the severity of disease present, I’d had if for at least 10 years. In hindsight though, knowing what I know now, I believe I’d been having symptoms as early as 16 years old.
 
What treatments have you tried? Did they help? Did you have side effects? Etc.
Over the years, I have tried many treatment options, with varying degrees of success.  I have tried high dose pain killers, including: (Ibuprofen 800 mg 3x’s/day, every day), Dilaudid, Fentanyl, Tramadol, Elavil, Neurontin, Mefenamic Acid, Vicodin, Norco, and Oxycodone. I’ve also tried hormonal therapies with continuous birth control and Lupron. I’ve tried nutrition and dietary changes as well, along with herbal and homeopathic remedies, pelvic floor therapy and therapeutic massage. I’ve had 2 excision surgeries and a hysterectomy.
 
Elavil helped really well for a few years. But, it took quite a bit of experimenting to find the right dose to control the pain and allow me to function for daily life activities; as higher doses can cause marked drowsiness. After experimenting with many types of birth control, I have found more long term relief the past few years taking Sprintec continuously. Though I’m not committed to any particular dietary label, I have found that eating a more plant-based diet and continuing to eliminate my trigger foods gives me even greater relief than most of my medications. 

I’ve had the worst experiences with Neurontin and Lupron. Neurontin gave my equilibrium imbalance and vivid night dreams. I also had terrible vertigo and severe nausea. Lupron was the worst of them all. Almost immediately upon starting the drug, I experienced hair loss, rapid weight gain, severe acne breakouts, night sweats, severe hot flashes, vertigo, seeing spots, hearing sounds that weren’t there, blurred vision, memory loss, headaches, vaginal dryness, bruising very easily, and extreme mood swings. I developed severe depression, anxiety, and suicidal ideations. I still experience severe TMJ and teeth clenching/weakening 11 years later. I also still struggle with episodic anxiety and depression as well.

My best experiences have been with excision, pelvic floor physical therapy, and hysterectomy. 
My first excision was is 2008 and it would be another 10 years before I’d need another one. I received pelvic floor therapy after both of my surgeries and I feel that it played a big part in strengthening my core and helping the muscle spasms that I used to have. I recently had a hysterectomy one year ago, and that was for my severe diffused adenomyosis, which I was diagnosed with several years after endo. 
 
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.)? 
Five things that I must have, especially on a bad pain day are:
My hot water bottle, herbal tea, my microwavable neck wrap, valerian root extract, and Netflix.
  
Do you have other illnesses? If so, would you like to mention them? What are they?
In addition to my endometriosis, I was diagnosed with severe diffused adenomyosis. I recently underwent a hysterectomy last May for it. 
  
What is something you wish you would have known when you were diagnosed?
I wish I had known that there was no cure. My first doctors left me with the impression that once I had surgery, that would be final and I would never have to worry about it again. If only I had known then, how wrong they were. 
  
How does it affect your daily life?
Since the surgery, it doesn’t affect me in terms of pain and discomfort as much as it used to. However, I still need to be mindful of what I eat. I still need to take care to not physically over-exert myself and keep my stress levels at a minimum. I still need to monitor and track my symptoms, being sure to note any significant changes. I still have to remember that absence of symptoms does not equal absence of pathology and I still have to use all of my management tools at 100%, even if my symptoms are repressed or negligible. 
 
How are you doing now with symptoms etc.?
Right now, I’d say I’m about 90% pain-free, following my last surgery. I do still have my right ovary, so I do have mini flare-ups from time to time. I also struggle with occasional fatigue, but overall, I would say my quality of life and health has improved significantly.

Is there any other information you would like us to know about your illness?
The main thing I want people to know about my illness is that it does not define who I am. It has definitely repositioned and restructured many areas of my life. It has caused me to look at myself and learn to love myself in a new and different way. While it has become an additional part of my life, it does not control my life. 
 
What piece of advice do you want to give readers?
I would say to readers, please don’t discount or ignore the toll that this disease can take on your mental health. Consider making therapy or counseling an integral part of your treatment plan. Depression and increasing suicide rates among endometriosis patients are steadily increasing, yet it is largely left out of the discussion when we talk about treatment plans and symptom management. 

How can someone show support?
If someone in your life has endometriosis, one of the best ways to show support is to simply listen. Don’t listen to respond. Don’t listen to always offer advice. Just listen and let them be heard. Often, we are dismissed in so many ways by so many people, the biggest show of support we can receive is to have someone simply say: I hear you, and I believe you.  

How can readers connect with you?
Readers can connect with me through any of the following:

• Facebook: https://www.facebook.com/fightingfiercely
• Instagram: @fighfierceendo
• Twitter:       @fightfierceendo
• YouTube: www.youtube.com/UCplZtLfPr6Ehps8qgIw_O1Q
• Website:   https://www.fightingfiercely.com

Take care,
💛Samantha 

Heather Guidone, Program Director, Center for Endometriosis Care is the first guest for the Chronic Illness Support Guest Blog! You can find information Heather has provided about endometriosis and adenomyosis as well as some of her journey below. We hope you find this information helpful in your journey with endometriosis and/or chronic illness.
​
Illness: former stage 4 endometriosis/adenomyosis 
 
What is the difference between a gynecologist and an endometriosis specialist? A general gynecologist typically divides their time between OB and Gyn. They may also do some pelvic surgery and in-office procedures; rarely, however, do they perform advanced surgery (excision) for endometriosis. They do provide a wide range of important women’s health care services, but typically don’t offer subspecialty care for the disease.
 
Endometriosis specialists, by contrast, are dedicated to the diagnosis and expert treatment of the disease. In a Center of Expertise like ours, for example, we are exclusively focused on endometriosis and related pelvic pain gynepathologies. We’ve spent the past three decades providing diagnosis and highly skilled treatment of the disease, utilizing a multidisciplinary Laparoscopic Excision (LAPEX) / integrative care approach. We are also heavily involved in endometriosis surgery training and collaborative education, advocacy and policy efforts.
 
The caveat is, there is no formal accreditation for “endometriosis specialists” – therefore, any OBGyn can say they are a specialist. Peer recognition and patient referrals can play a large role in finding an actual specialist, and be sure to ask the right questions and look for red flags: http://centerforendo.com/drqanda
 
How can people become more educated about endometriosis and what resources do you recommend?
There is so much misinformation ‘out there’ about endometriosis. Sadly, even some of the most trusted medical sites we would typically turn to for accurate health education don’t have quality information about the disease, and the media largely gets it wrong quite often as well. Even some of the organizations founded to promote the disease have misinformation in their materials. It’s so important for people living with endometriosis - or who think they may have the disease - and their caregivers to seek out *quality* resources, as factual education, connecting with others who understand and finding the best care possible are the keys to coping better. A great place to learn about all things endo is our website, especially our educational article at http://centerforendo.com/endometriosis-understanding-a-complex-disease.
 
Check out moderated support communities as well – places like Nancy’s Nook for Endometriosis Education, Endometropolis and the ExtraPelvic Not Rare FB groups can help you find others who live with the disease, and those groups often feature input from endo specialists. There are lots of quality endometriosis organizations which can also help, that have the shared universal mission of raising awareness and connecting visitors to various resources. Some of them are listed here:
 
https://www.endometriosis.ie/
https://www.endoblack.org/
http://www.endocenter.org
https://endowarriorssupport.com/
https://endogirlblog.com/
https://endoinvisible.org
https://www.endometriosisaustralia.org/
https://www.facebook.com/endosupportNI/
https://extrapelvicnotrare.org
https://www.facebook.com/EndoOrgCanada/
http://www.endo.is/
https://www.endott.org/
http://www.endofoundke.org/
http://www.endometriosisnetwork.ca/
https://theendo.co
https://www.efhou.org/
 
There are other key resources as well, such as -
Dr Sallie Sarrel and Dr Andrea Vidali’s EndoSummit, a fantastic educational event for professionals and patients alike: https://theendometriosissummit.com/
 
https://www.aagl.org/ - AAGL is a terrific professional organization for your doctors to be involved with. They also offer a patient-facing site for general gyn surg resources and information: http://www.misforwomen.com/
 
EndoWhat? and Endometriosis New Zealand have outstanding education programs in place:
 
https://nzendo.org.nz/education-in-schools/
 
https://www.endowhat.com/ - in addition to their School Nurse program, EndoWhat? is also home to the groundbreaking endometriosis documentaries of the same name.
 
Some great books to add to your endo library include (in no particular order):
 
“Doing Harm” by Maya Dusenbery
“My Femtruth” and “Femtruth: Endometriosis Edition” by Silvia Young
“Living with Endometriosis” by Samantha Bowick
“Endometriosis: Healing Through Nutrition” by Dian Shepperson Mills & Michael Vernon
“Googling Endometriosis”, “Surgical Management of Endometriosis” and “Endometriosis: 100 Q&A” by Dr David Redwine; you can also see his work at http://endopaedia.info
“Beating Endo” by Dr Iris Orbuch & Dr Amy Stein
“Endometriosis: the Makings of a Modern Epidemic” by Kate Seear
“Endometriosis and Pelvic Pain” by Dr Susan Evans & Deborah Bush
 
What is something you wish you would have known at the beginning of your diagnosis? So much! Most importantly, I would go back and tell my younger self that the pain and symptoms weren’t normal, they weren’t in my head, and I didn’t have to suffer in silence needlessly. I would tell myself that better care was possible, and that the disease is best treated through an integrative approach ranging from excision surgery to pelvic floor therapy.
 
How did you first get involved in endometriosis and patient advocacy? I was diagnosed decades ago in my late teens, so there was no social media, no publicity campaigns, no awareness walks, no websites, no talk shows featuring the disease, no celebrity PR efforts featuring their stories alongside their doctors. I had never heard the word prior to diagnosis. No one talked about endometriosis. I didn’t know anyone with it. I had no idea who might relate to my situation. So my determination to get answers about my own health brought out the citizen scientist in me and was really the early driving factor to what became a lifelong professional role in endometriosis. I spent a lot of time in libraries, poring over books and calling researchers out of the blue – no Pubmed.com in the late 1980s! - and eventually my efforts led me to a then-small community of others. We communicated by phone and actual letters (gasp!); those people were a lifesaver for me then. I was presented with some opportunities to do outreach and education, and ultimately an accidental activist was born. I then eventually connected with others professionally and started working in the endometriosis space exclusively and full time. Serving as Faculty at many events and being a part of so many boards, panels, coalitions and other endometriosis projects, I have had the absolute honor and privilege of collaborating with some of the best advocates in the global endometriosis community – standing on the shoulders of many giants - and they still continue to inspire me through their tireless efforts today. It is humbling to do the work we do, and I consider myself incredibly fortunate that I was able to take my experiences with the disease and turn them into something that might help others.
 
There is a lot of injustice surrounding endometriosis, make no mistake, and the disease space is rife with the agendas and biases of some. Patients don't always come first in this disease in some places, sadly, and many decisions are made about us without us. On many days it feels as though we are still pushing the same heavy boulder from 30 years ago uphill. Having the benefit of historical perspective, however, I do know that there are now many more people pushing the boulder with us, and we really have made tremendous strides over the years. There are a lot of good individuals working hard to find answers and make life better for all those affected by endometriosis. It’s a privilege to stand among them.
 
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 disease characterized by the presence of endometrial-like tissue located in extra-uterine sites (“endometrial-like” is an important distinction, as the lesions are not comprised simply of normal endometrium that has gone rogue, as is often mistakenly claimed). The disease is a major cause of pain, subfertility, disability and significantly compromised quality of life. Impaired bowel, urinary, sexual and reproductive functions are common with endometriosis, and its systemic influences can significantly impact physical, mental, emotional and social well-being. Though often described as a ‘disease of menstruation’ and linked only to ‘painful periods’, endometriosis can in fact impact menstruators and non-menstruators alike, with symptoms routinely affecting sufferers far and apart from menses - including those who have undergone hysterectomy, do not menstruate (and in some cases, have never menstruated) and/or are post-menopausal. Teens and adolescents can also suffer from the disease, and we must also be inclusive of gender diverse people struggling to access endometriosis care and validation within a traditionally female-identified space.
 
The far-reaching impact of the disease on health-related quality of life cannot be undervalued – those living with endometriosis collectively report disruption (often chronic) to all domains of life, including work, education and social activities. The disease also takes a considerable financial toll on those affected, with personal costs estimated beyond $10,000 per patient, per year in the United States alone and beyond $15,000 per patient, per year in lost work productivity, according to recent data.
 
While endometriosis most commonly develops on pelvic structures, it is also found in distant locations like the lungs - yet is often ignored, misdiagnosed and/or improperly treated. For example, left incorrectly or inadequately treated, sciatic endometriosis can cause nerve damage; GI involvement can result in anatomic distortion, pain and alterations of bowel habits such as constipation, diarrhea, tenesmus, dyschezia and rectal bleeding; and bladder endometriosis may result in urinary frequency, tenesmus, burning pain, pain with micturition, dsyuria and suprapubic discomfort or pain. Without question, endometriosis is a systemic disease with body-wide impact; early diagnosis and proper intervention are critical. Unfortunately, despite affecting an estimated 176 million individuals, quality of care for endometriosis remains fragmented, with high treatment failures and consequent recurrence posing formidable challenges outside the subspecialty centers. Definitive causes remain elusive, as do universal cure or prevention, and much of the discourse surrounding etiology and treatments is ardently debated.
 
I've lectured and met patients and professionals from around the world, and our stories are always the same. Mine isn't different or noteworthy. My diagnosis came about just like anyone else’s...after being tired of suffering, I said ‘enough’ and demanded answers. I eventually was fortunate enough to find a caring physician who believed me, and immediately scheduled me for laparotomy, diagnosing me with stage 4 disease with deep bowel, bladder and extrapelvic involvement. Unfortunately, he retired soon after, leaving me in the hands of other doctors who didn’t understand endometriosis at all. That was the beginning of my long repeat surgical/medical suppression journey of failed treatments, infertility, crippling pain and a derailed life for years. My relief finally came through the hands of compassionate, skilled endo specialist – 2,000 miles away – who changed – and saved - my life.
 
What treatments have you tried? Did they help? Did you have side effects? Etc. Before my excision surgery – the only thing that ever helped my pain and infertility – I had multiple laparotomies, laparoscopies with superficial ablation of some lesions and a lot of lesions left behind, countless oral contraceptives, 4 rounds of Lupron injections (by the time I was 29 I had osteopenia, and by the time I was 39 I had osteoporosis – draw from that whatever conclusion you’d like), and various other fruitless attempts to treat my pain and crippling symptoms. I also had an emergency cholycystectomy, and later, a total hysterectomy (including cervix)/bilateral salpingoophorectomy following the birth of my child. Like many with endometriosis, I also had an incredibly complicated high risk pregnancy, after struggling with infertility for so long. Had I been able to access specialty care at the first signs of my disease, I would likely not have had to undergo poor surgeries - which made quality surgery that much more difficult - and medical therapies that were harmful to me, while continuing to suffer from a disease which just became progressively more painful and worse as time went on. I can’t change anything for myself, but I can continue my fight to make sure no one else has to be subjected to such abysmal care. Quality treatment and skilled, caring physicians do exist - no one needs to put up with subpar treatment or dismissal by any doctor.
 
Do you have other illnesses? Like many people with endometriosis, I also have other health challenges, among them being Hashimoto’s Disease, which can be a real struggle to manage; I have a wonderful doctor who has been with me for years trying to find the right ‘cocktail’ for that. I have some other things I deal with as well, like probably most of us in the community. We are all muddling through, doing the best we can.
 
How can someone show support (awareness colors/ribbons, etc.)? Yellow is the ribbon color for endometriosis (along with a couple other very important causes like support of our troops). The best way anyone can show support for someone with the disease, however, is by educating themselves and letting their loved one know they believe them when they say they are in pain. There are many other ways to help someone with endo as well, such as going to doctor visits with them or buying them an educational book on the disease. Reach out – ask your loved one with endo how to do the most good for them. Employers can also help support endometriosis by educating staff about the disease, making treatment resources available under any insurance plans, and accommodating their affected employees to the extent possible.
 
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
http://instagram.com/centerforendocare
https://www.facebook.com/centerforendometriosiscare
https://twitter.com/CtrForEndoCare
We are also very pleased to offer free records reviews for anyone who may wish to determine if our Center can help them. Many of our patients have been told – as I was – that their case is hopeless or that removing their organs will “cure” them or that the only answer for the disease is found in an injection or pill. There is a better way, and there is always hope - so we encourage anyone struggling to reach out to us. Details can be found on our website at http://centerforendo.com, by calling our offices toll free at 866.733.5540 or emailing heather@centerforendo.com.

Take care,
💛Samantha