Read Rennie’s take on throwing cancer a curve ball on CancerLyfe.
My Diagnosis Story: At the age of 15 I was a scrawny, little girl with terrible stomach pains and barely any meat on my bones. But let me backtrack. At the age of 12, when I wasn’t growing or gaining any weight, while all my friends were thriving, I was misdiagnosed with a growth hormone deficiency. I started growth hormone treatments, which I was on for almost 4 years; and even though I grew, I was making little progress with my stomach pains and my weight gain. So we (and by we I mean my relentless Mom who never gave up on me, and me) went back to the hospitals, back to the gruesome tests, back to the doctors… only to get misdiagnosed again with an eating disorder. But my Mom and I swore to the doctor that I was eating, I just wasn’t gaining any weight and was in a lot of stomach pains constantly. God, the Universe, (or whatever higher power you believe in) must have wanted to help me out when he put me under the care of Dr. Jesse Reeves-Garcia at Miami Children’s Hospital because he properly diagnosed me with Crohn’s disease at the age of 16, with only 75 pounds on my 5’4″ frame. He quickly put me on a high dosage of steroids to help with inflammation, which got me on the path to recovery.
Treatment Plan:The steroids worked well for me for two years. Once they stopped working, Dr. Reeves decided to put me on Remicade, which I was on for almost 11 years. During that time, I did have to have a small bowel resection, but other than that, I was able to live a pretty normal life with my Crohn’s disease.
Recently, my doctor switched me from Remicade to Stelara, which I actually just started two months ago in the hopes of getting my disease completely under remission as I start family planning.
Where I am now: I am happy. I am healthy. I have the most amazing team of caretakers, including my husband, who battles this chronic disease with me and complies to my dietary restrictions and gives in to my every craving; my family and my friends, who have gotten me through very rough Crohn’s disease days (you know, the ones where you can’t even get out of bed); and of course, my incredible team of doctors and nurses at Cedars Sinai LA led by Dr. Christina Ha. I am not fully in remission, but my doctor is working arduously to get me there. And I know we will.
I also wrote a moving note for my last Remicade infusion. I think it might be helpful for other patients in a similar place as mine:
My last infusion ever July 22, 2021
As the nurse pokes my vein to draw 12 tubes of blood (checking for TB, hepatitis, CBC differential, regular blood work, mercury levels, etc.) tears start running down my cheeks.
“I can stop if you need a minute”, she says kindly. Her name is Kristine. I’m holding my husband’s hand tightly, he knows how much I dislike needles. I’m looking at the painted canvas that acts as a room separator and I look up at the high-ceiling recently renovated room at Cedars Sinai Hospital in Los Angeles. I feel the blasting AC hit my body and the needle successfully go into my left arm. I ask her to please continue and I grip my partner’s hand a little tighter (mental note: I owe him a hand massage) because it’s not sad tears rolling down my face and splashing on the comfortable gray reclinable chair.
It’s tears of gratitude slipping from my eyes. It’s gratitude to be treated in one of the best hospitals in the world, with some of the most caring nurses in the world, who care about my well-being beyond the walls of this hospital; who deal with my intense fear of needles—and the kicking, crying, cursing and screaming that comes with it; who accept my apologies for cursing under my breath when they stick me; who genuinely care for me.
It’s gratitude for being under the care of one of the greatest medical minds when it comes to IBD, Dr. Christina Ha, who doesn’t settle for having my disease under control but pushes until we find the solution to get me under remission; who holds my hand right before I go under for my yearly colonoscopy because I’m scared (it’s kind of our thing now); who hugs me when I cry loudly because we didn’t get the results we wanted; who promises me she’ll get me to a healthy place so I can have a safe pregnancy in the near future; who reminds me I have to remain positive through it all, regardless of the latest lab results; who patiently answers my every question, and who works so hard to keep me healthy. My Mom would have loved her. I’m actually pretty sure she finessed my care under Dr. Ha straight from Heaven.
It’s gratitude for having the most loving life companion, who calms my fears of all the scary side effects of this new drug by making a joke about those crazy pharmaceutical commercials we watch together that warn for everything; who makes dinner for me after infusions because I’m too tired to stand up; who drives me to every single infusion every six weeks without hesitation or complaints; who holds my hand through every needle stick and tries to distract me with “busy talk” like my Mom used to do when she held my hand 11 years back for my first infusion.
It’s gratitude for God’s Grace for putting me in the hands of this medical team; for guiding my path with this scary illness; for giving me strength and courage to battle Crohn’s disease with positivism and gratitude; and for not letting me lose hope.
It’s gratitude for my body for carrying me through all of these infusions since I was only 18 years old; for allowing me to receive these different drugs successfully with relatively no side effects; for giving me a grateful heart that can see the good in everything, even a chronic life-long illness.
It’s gratitude for my friends and family who have supported me in this journey through the flare-ups, the infusions, the new drugs, the dietary restrictions, the weight loss; who educate themselves on Crohn’s disease just so they can help me navigate it a little bit better; who keep track of my infusion dates and gastro appointments so I don’t feel like I’m going through it alone; who are texting me simultaneously throughout my hour-long infusion, checking in on me or just trying to keep me company virtually.
It’s gratitude for my father; who takes care of my medical bills so that I don’t have to worry about the finances behind my illness and I can focus on battling my illness; who has supported me so that I can get the best medical care and treatment for my disease as possible; who was by my side for my first and only Crohn’s disease related surgery 8 years back.
It’s gratitude for my Mom, who didn’t give up on an incorrect anorexia diagnosis 13 years back; who relentlessly fought to get me the best possible care; who didn’t give up on me—or my health— ever; who treated me to shopping sprees and yummy meals for making it through “tough” days at Miami Children’s Hospital when the doctors couldn’t find what was wrong with me. Gratitude that even after she’s gone, my illness— and everything in me and around me— keeps me connected to her. She would have been so happy to know that medicine has advanced to the point that I can now inject myself at home instead of coming to the hospital for IV infusions every 2 months. I know she is happy today. I know she is celebrating with me right now.
And even as I write this, the tears— and the gratitude— keep flowing. Thank you, God, thank you life. Here’s to the next chapter of my Crohn’s Disease.
Rob Weker describes how he took his diagnosis and started living, read more on CancerLyfe
Trauma leaves such a mark and imprint on us, that if we don’t do something to heal the trauma, it will only wreck us! This is where I was left after having several traumatic events in my life. For myself they just started compounding on each other, and it was not good!
The first part of my life, I dealt with a lot of childhood trauma, and this definitely left emotional scars on me that I still feel to this day. At the age of 20, I joined the Navy, and this was my escape from all of my problems, or so I thought. Well to fast forward through my Navy career, I was in a natural disaster in March of 2011, where my ship had to respond to the tsunami from the Japan 9.1 Tohoku Earthquake. My ship had to go on a search and rescue mission to help the Japanese government recover boats and what not from the aftermath of the earthquake.
During Operation Tomodachi, my ship had to completely secure all ventilation and potable water for close to a week, so we didn’t get contaminated by nuclear radiation from the Dai Chi nuclear power plant that was hit with the tsunami. There were some events that took place during this time that really messed up my mental health! Following this experience, my mental health completely went down hill. Eeventually I landed on limited duty for my mental health.
My drinking had gotten to the point of no control at all! I just wanted to drown every single thing that I felt. I was in Japan at the time, and even went to inpatient rehab for drinking where I made some significant improvements. But the Navy set me up for failure and put me right back in Japan where I had just come from. They sent me right back to where I had no support, and this was where events took place that had let my mental health completely go. They sent me back to Japan to be on limited duty, and to basically finish out my time of a 6 year contract. Well, when you put someone directly back into the environment that destroyed them, it is only going to destroy them again. So the Navy started me back on Klonopin, which in the words from a Navy Psychiatrist, is “alcohol in a pill form.” So I wasn’t really set up to succeed in this situation for my sobriety. I even had my rehab Psychiatrist and Counselors highly encourage me to stay stateside for my sobriety.
To make a long story short on this topic alone, this eventually led me to the point I was blacking out again. I ended up failing a urinalysis for drugs, and I had been diagnosed with panic disorder and agoraphobia this whole time, until I messed up. Then the Navy said I had adjustment disorder, kicked me out, and I get absolutely nothing for the 6 years I was in. Even for all the health problems, they don’t give me anything for it. I went in the Navy a lot healthier than I am now, but since my mental health was so gone, and I failed a drug test, they won’t help me at all.
Now this event stuck with me and my image for years! I felt like I had made the biggest mistake of my life, when really I wasn’t being helped for a severe mental health issue. I got out of the Navy, and I went to the bottom of the barrel! I was reckless when I got out, because I didn’t care about anything anymore. I just wasted 6 years of my life, to only get a hell of a lot of health issues, and nothing more. I wasn’t too happy with this! I am very thankful to still be alive today, because I didn’t like anything about myself.
I tried to run from myself and my problems more when I got out. Rather than facing my problems, it always seemed as if I just moved it would fix everything. So this landed me in North Dakota working in the oil fields for a year. Let me tell you, it is brutally cold there, and if you enjoy trees, well forget that. North Dakota doesn’t have very many of them. I was only running from my problems there, and I got very involved in drugs again.
I eventually got out of North Dakota, but I was only running again from my mental health issues. I started a job in Seattle, which didn’t last long, because my problems came right along with me. I drank myself out of that job, and I was also very involved in drugs then as well. This eventually made me lose everything that I owned, and this was the big wake up call that I needed in life!
When I lost everything I owned, it felt like it ripped a little part of me away with it. This was what I needed to wake up, and realize what I was doing! This is when I started to make the shift towards working on my mental health.
I took a different approach than many do when dealing with drugs and alcohol. Healing is a self journey, so whatever works for you is what you should do. For myself I couldn’t do AA meetings, because my mom used to take me with her when I was a kid. So for me this is a HUGE trigger. I don’t feel comfortable being in there listening to someone tell me stories that I have all experienced. So I took a different approach to this.
My approach to sobriety was diving into a lot of self help, and how can I improve myself as a person. I also used a lot of affirmations when I would have negative thinking come up. I have had people from AA meetings tell me I am absolutely crazy for not doing AA, but healing is all a personal journey, and it isn’t linear. I am not a big fan of the mentality of people thinking like that either, because you are placing judgement on my way of healing, which works for me. So that is another reason I don’t jive much with AA meetings. I feel I have been judged by them with my approach to staying sober. If it works for you, then you should stick to it! Do whatever works for you, because this is your healing journey! Do what works for you, and I will do what works for me.
Now I am in the process of working through my traumatic memories with a therapist. We are doing EDMR, which is specifically for trauma, and working with the memories. I put off this portion of working on myself for years! I won’t say it is easy, but it is totally worth it! You have to deal with your trauma, otherwise you could be repeating exactly how I was with my addictive behaviors. Trauma isn’t something that goes away by itself either. It gets trapped within us, and it stays there causing a heap of problems! You have to work through these things, and it will lead you to a much happier life!
A Celebratory Conversation with the Winner of the 2021 Innovation Challenge in IBD
At Lyfebulb, we believe that personal experiences with chronic illness can lead to potentially lifesaving and definitely life-improving innovations. One example of this success can be seen through the Lyfebulb and Arena Pharmaceuticals 2021 Innovation Challenge in Inflammatory Bowel Disease. The Winner is Atray Dixit, PhD, the Co-Founder and CEO of Coral Genomics. He was inspired by a family member who suffered with IBD. On September 14th, Lyfebulb spoke with Dr. Dixit and a small panel of guests as part of their virtual Fireside Chat Series.
The chat was moderated by Lyfebulb Founder and CEO, Karin Hehenberger, MD, PhD. Other panelists included Tina Aswani Omprakash, a Lyfebulb Patient Entrepreneur, Founder at Own Your Crohn’s, and Co-Founder at IBDesis, along with Brad Vale, PhD, DVM, who is the Co-Founder and General Partner of Treo Ventures.
The award-winning product by Coral Genomics involves a special type of genetic screening that helps identify which medications will and will not possibly work on a particular patient by identifying critical biomarkers. In the Fireside Chat, Dr. Dixit said that the first application is a blood-based clinical test to help doctors decide on best medications for their patients, with the goal of avoiding unnecessary surgeries. The process includes obtaining information on the patient’s clinical history, such as what clinical drugs they have tried in the past, because all the details are important for a biological learning model. Dr. Dixit hopes to collaborate with other companies to develop infrastructure for clinical studies, especially “to help track patients in the middle of the before and after time points.”
Ms. Aswani Omprakash, who lives with Crohn’s and a permanent ileostomy, has been personally affected by her father and other relatives who lost their lives from IBD. She understandably praised Dr. Dixit, saying she is grateful for all entrepreneurs who bring the community together with new innovation, medications, and metrics that improve quality of life, such as the biomarkers identified by Coral Genomics. Noting that it is difficult to predict how IBD will present and evolve over time, she says that biomarker technology will hopefully help that; anything that makes the patient and caregiver’s life easier is crucial. Ms. Aswani Omprakash added that this innovation helps make her more comfortable and hopeful about her future. However, she believes that we need more IBD specialists, not just gastroenterologists, “for better patient access and to eliminate disparities.”
Dr. Vale has also had a long-term interest in diagnosis, therapy, and “getting the work done that ultimately leads to improved patient care.” In response to Ms. Aswani Omprakash’s reference to eliminating disparities, Dr. Hehenberger asked Dr. Vale about diversity as a venture capitalist. He noted that “diversity manifests itself in open mindedness in patients we’re going to treat to create a bigger market.”
In later discussion, when Dr. Hehenberger pointed out the evidence of so many drugs only working on a specific racial group, the advocate in Ms. Aswani Omprakash talked passionately about diversity in clinical trials, pointing out that the South Asian population, in particular, demonstrates how different phenotypes of disease present in different ethnic populations.
On this front, all agreed that Dr. Dixit’s innovation would address all their concerns about the ever-evolving IBD community and the varied needs of its diverse patient population. Hats off to Coral Genomics!
You can watch the Fireside chat here
You can watch the winner announcement here
I am the mother of a 23-year-old with ulcerative colitis. Some could argue that I statistically had it coming since my mother lost her colon to ulcerative colitis at age 22 and my son’s father also lives with the disease. Beyond that, IBD is prevalent in other relatives on both sides of my children’s family. As one can plainly see, this illness was not new to me when my son was diagnosed at the tender age of 9 years old.
Unfortunately, familiarity and experience with a disease does not make one an expert when thrown into the caregiver role; emotions can run rampant even as we work hard to learn all we can to help our children. That is why my September 28th conversation with Grady Stewart was so rewarding – it provided me the feedback and validation I needed as a parent who still questions her past and present efficacy as a caregiver.
On Grady’s ambassador profile in Lyfebulb, you can learn a bit about his story and passionate involvement with the IBD community, but in the live chat I had with Grady, you can see the impressive young man he truly is. When I was thinking of what questions to ask Grady, I focused on my own concerns as a parent caring for my child. What follows is a sampling of the questions and points that touched home for me the most.
Since Grady was diagnosed as a freshman in college, he talked about how hard it was to suddenly be thrown back into the role of the child who needed his parents while he had already taken steps towards becoming an independent adult in the college world. He said he felt extremely isolated when he first learned of his diagnosis because he really did not know anything about UC. He felt vulnerable, adding, “It takes a lot of courage and bravery to be open in public about it … I don’t know that I was there in my journey.” So he was grateful for his ability to seek out parental support.
That led me to ask Grady which was more important to him – independence or support, given his age upon diagnosis. He definitely chose support, stating, “Support was the pathway to independence for me.”
As the parent, I was encouraged to hear that. Even though my son is now an adult, he has lived with this condition for almost as long as he has had memory, and I have worked hard to transition myself from a fully responsible parent and caregiver of a child with chronic illness to a far less responsible parent and support partner along my son’s journey. But I would be lying if I said it has been easy.
I asked Grady to discuss the most and the least helpful things his own parents had done for him and continue to do in regard to caregiving.
He noted the ongoing support of actually being there for appointments and treatments as a big plus. When Grady observed that “There is so much love in that act of a friend or caregiver coming with you for a [two- or three-hour treatment]”, it particularly hit home for me. I spent more hours than I care to count trying to entertain my son with movies, stories, or jokes while he sat through an infusion or prepared for an MRI or other more invasive test or procedure. I really needed to hear how important that support has been to Grady because our own sick children often do not have the wherewithal to thank us at those moments because they are under their own duress.
Regarding the least helpful thing his parents have done, Grady demonstrated such insight and compassion when he recognized that “Caregivers are very much going through the same wins and losses as the patient, in a different way, but it very much impacts them.” Still, he has been frustrated when they worry too much or are overly involved. He says they seem to have difficulty giving up control.
Well, there you have it, I thought to myself, realizing that I have certainly been just as guilty as Grady’s parents, which brings me full circle to my comment that becoming the less responsible parent and support partner is not easy. It is our own ongoing journey.
Grady and I summed up our visit with his advice to caregivers: Don’t forget to take care of yourself too.
At which point I was thrown back into memories of walking the treadmill at the gym in the children’s hospital in Miami back in 2012, while my son lay under full sedation after having finally lost his colon due to this pernicious illness. And I remembered how guilty I felt stepping out of the ICU for those moments just so I could clear my head and breathe full breaths. But Grady’s advice is spot on. If we are not good to ourselves, we can be no good to those who need us.
So continue soldiering on, my fellow caregivers. As Grady also pointed out, we are part of an ongoing partnership with the patients we hold dear. And according to this remarkable young man, we are definitely needed and appreciated.
Lyfebulb Live with Grady Stewart:
This interview holds a special place in my heart, and not only because Jacob is my brother, and my living donor. It’s a unique insight into the experience of an organ donor, one I, as a transplant recipient, cannot fully understand. I am one side of the story, the donor is another, and together we come together to create the transplant community.
Jacob is a university student, currently working towards an English degree and minoring in theology and communications. His hobbies include working out, playing sports, reading and watching movies (He lists Lord of the Rings, Star Wars and the Chronicles of Narnia among his favourites).
As a donor, he underwent surgery to remove 60% of his liver and, despite challenges along the way, he describes his recovery process as fairly easy and straightforward. This may not be what everyone would say, but he credits an amazing medical team for his recovery, and upon entering the transplant centre, I can confidently say he is still more popular than me. Young, physically fit and the most generous guy around, Jacob quickly became the topic of conversation all around the hospital, and he is still an inspiration to doctors and nurses today.
Going back to the basics and relearning how to walk post surgery was an enlightening and oddly enjoyable experience, says Jacob. As a busy college student, he was also forced to rest and recover, giving him an entirely new perspective on life.
His sense of humour kept him going through the bumps in the road, from asking his doctor when he could hit the gym again after waking up post surgery to shrugging and saying “You win some, you lose some” when it came to his near death experience overdosing on pain medication while on the recovery floor.
Throughout the whole process, with all it’s complex losses, Jacob says it is beyond worth it. He draws his inspiration from people who are doing what they love, living life to the fullest.
Jacob is passionate about living life and loving others. And I am beyond proud to be his big sister.
(Jacob would also like me to add he is currently single and now accepting applications for potential dates)
Original post from athomewithashleydawn.com
I love all things lavender. Essential oils, cakes, cookies…the list goes on and on. I diffuse it at night before bed. I spray it on my pillows for a calming sleep and I also make an amazing milk bath with it. I have always had very sensitive skin and remember talking milk and oatmeal baths in the winter because my skin would burn in pain. It was torture. I strayed away from the baths as I got older but I remember feeling so much better after having one. As an adult, I’m still struggling with issues with my skin so this milk bath is back in action around here. It’s only three ingredients and aside from being great at home, they make excellent gifts.
Lavender Milk Bath Ingredients
- Powdered Milk – Cleanses and most importantly, naturally moisturizes skin.
- Baking Soda – Removes dead skins cells while balancing the PH, helping you maintain clear skin.
- Lavender Essential Oil – A calming oil said to release tension, disinfect, increase circulation and relieve pain.
Simply combine all the ingredients together and stir to remove any lumps from the oil. Store it in an airtight container for up to a month. When you decide it use it, you only need half a cup or so to make your bath.
Find the original post here
I quit! I did not say it like that. But the meaning was there. For five years I have served on the school board of a local charter school. Last evening, I resigned effective July 1, 2019. I believe in the mission of the school; it is a place where kids in public schools find a safe environment to pursue their high school diploma. Oftentimes these students have been bullied, they do not fit in, or they have disciplinary issues that cannot be solved by a local middle or high school. In short, we take the kids who do not fit in, and we help them obtain a Middle School education or High School diploma. In the past, I have served as Board President, Vice President, and Secretary. I am incredibly proud of the contribution I have been able to make there. I hope the remainder of the Board is as well.
Pick one activity
Including this Board right now I have three time consuming monthly meetings. The school Board requires about 2-4 hours per month, the Arthritis Foundation Patient Engagement Committee requires one telephone hour per month, and the FDA Patient Engagement Committee also requires 1-2 telephone hours per month. While that seems like a small commitment, I also must add several hours of reading to be an effective participant of each of these bodies. The combination of the three simply needs more spoons than I can afford. So, I needed to resign from one of these positions. I chose the school board because during the five years I have served, the organization has grown much stronger and is in a wonderful place both financially and regarding personnel to be able to explore its services and sustain its growth for years to come. I am proud of that, and it helps me feel good about my service.
The factors – I didn’t have enough spoons.
I knew I had to give up at least one of these obligations because of Rheumatoid Arthritis and Ankylosing Spondylitis. The fact is that no matter how hard I try I cannot do it all. I am 61 years old and as we all know three autoimmune diseases is a lot. Two of these diseases are rearing their ugly head recently. In February I will have foot surgery to correct damage done by Charcot Foot12 (an outgrowth of diabetes and to some degree RA3), my back hurts nearly 24 x 7 and while RA seems stable the question is how long will that last?
In short, my spoons for external volunteer efforts are used up, and I need some back (some back – get it). Resigning from the school board gets me a few of those spoons back, and those spoons will be applied to staying healthy and spending time with Sheryl.
I need to keep spoons in reserve.
Perhaps I needed to get stretched too thin in order to be able to realize how important it is to keep some spoons in reserve? I can honestly say that before I had to retire, I would have kept going no matter what. I am deeply passionate about alternative education opportunities for kids. As a former school administrator, I know we lose too many kids because traditional high schools, as good as they are in our area, just cannot be everything to everyone. I was nearly one of those kids, and while I made it through, a place like this Charter School might have helped me.
As people with RA, we must prioritize and carefully select where we place our efforts. This was a difficult choice for me to make. That limit turned out to be sacrificing my involvement with this Board. As I resigned (effective July 1), I told the board members that I hope I had served well enough that someday (when I get a few of my spoons back), perhaps they will invite me to join once again.
Never burn a bridge, after all, I needed to serve on this board when I started five years ago because I needed to find meaning for my life. I imagine that need may reappear. If it does, I hope I can serve once again. I can see what has been accomplished over this last five years and I am excited about the next five years for the organization. I will be thrilled to watch it grow into a powerhouse school for kids who do not always fit into a regular school environment.
My question is what are you passionate about that has caused you to volunteer to serve an organization and how did the experience shape you? Let me know.
Posted on Mike’s YouTube
How to Prevent Burnout at Work: This video focuses on how to prevent burnout at work while working remotely. The stress of working from home is now an important component of workplace mental health awareness. If you’re feeling burned out at work, especially working from home, then you need to watch this video. In this video ,Mike Veny offers you 3 powerful tips that you can use for preventing burnout at work. He believes that it’s important to have tools for self care at work so you learn how to not get burned out at work. As a workplace mental health speaker, he gives presentations and training to companies throughout the world. If your home is your new workplace, then it’s up to you to make it a mentally healthy workplace. The stress of working from home has lead to a type of depression that Mike refers to as “working from home depression”. This makes life more complicated because if your burned out at work, then you’re also burned out at home. So again, watch this video to learn how to not get burned out. One tip that’s not included in this video on how to prevent burnout is to remember that burnout is often the result of a lost sense of purpose. Getting clear on your purpose and maintaining a focus on it will go a long way to support you in avoiding burnout at work. As a person who lives with depression, anxiety, and obsessive compulsive disorder (OCD), Mike is also a high achiever who works from home. He’s no stranger to the stress, exhaustion and burnout that can come with working where you live. He’s learned that being intentional about boundaries and self-care are the keys to navigating this situation.