NEW YORK, NY, USA, July 15, 2020: Lyfebulb, a patient empowerment platform, in partnership with Orexo, a global leader in the addictive disorders field, invites entrepreneurs to apply now through August 7th for the Lyfebulb-Orexo Innovation Challenge. The goal of the initiative is to bring together new solutions to address unmet needs in supporting successful, long-term recovery from alcohol and opioid use disorders.
Submissions may span not only digital health solutions, but also consumer products, telehealth, mobile health, health information technology, personalized care, and devices, sensors and wearables that support all facets of recovery.
“These business concepts may directly treat the substance use disorder or be used in tandem with treatment to foster healthy habits and routines, improve mental and physical well-being, or address co-morbidities of the disorders,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Solutions should improve outcomes and experiences for either those struggling with addiction or their support partners; both parties are critical to maintain long-term success.”
The Innovation Challenge will take place, virtually, in October 2020 and will be open to Patient Entrepreneurs—those who have been motivated by a personal health experience of him/herself, or as a support partner for a loved one. Selected finalists will receive an invitation to pitch their solutions to an expert panel of judges comprised of healthcare industry, medical and patient leaders. Competing finalists will be considered for possible partnerships with Orexo or for investment. The winner will be awarded a $25,000 monetary grant.
Patient entrepreneurs may apply now through Friday, August 7, 2020 at 11:59 p.m. EDT at https://lyfebulb.com/innovation-award/orexo-2020. The competition is free to enter. Official eligibility criteria, and terms and conditions can be found on the Lyfebulb website.
About Lyfebulb
Lyfebulb is a chronic disease-focused patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental health, migraine, transplantation and chronic cough.
Orexo is listed on the Nasdaq Stockholm Mid Cap (ORX) and is available as ADRs on OTCQX (ORXOY) in the U.S. The company is headquartered in Uppsala, Sweden, where research and development activities are performed. For more information about Orexo please visit, www.orexo.com. You can also follow Orexo on Twitter, @orexoabpubl, LinkedIn and YouTube.
One of the most vital ways to practice self care is setting boundaries. For me this is also extremely difficult. I am fantastic at encouraging others and supporting them in standing up for themselves… but when it comes time for me to show up for myself in the same way, I feel like I am free falling, and I am terrified of heights. I hate rocking the boat. I hate having difficult conversations that will surly upset others. That’s not to say that I have never done it. When it comes to standing up for my husband or my children, the world better hold onto their hat. I have no problem throwing myself into the fire for them, however, when it is for myself, I am afraid to fan even the smallest ember that might burn someone else.
Recently I had to say no to a simple task someone asked me to do. For a normal, healthy person this task was all of two minutes and is seemingly very easy. For me, in the midst of an attack, having just taken my meds and feeling miserable, I knew that the “simple task” being asked of me would only make my pain worse, leave me dizzy and I just couldn’t do it. I said, “No, I am not going to do that right now, I don’t feel good.” The reaction I got was hurtful. There were no words spoken, just as seething silence and stomping off to do the task on their own. The lack of compassion was shocking and left me hurt, angry and sick to my stomach. To this day I still have not addressed the issue (or any others that have come up) because it is so hard for me to take that jump off the cliff to stand up for myself and set boundaries.
Last year when I learned about the enneagram test, it was unsurprising to learn that I am a Type 2 “the helper.” People-pleasing is one of the key traits to describe a 2, and although I knew this about myself I have never really put the label on it. I DO want to please people. I want to help others and show them love and kindness. I want others to love me and appreciate what I bring to the table – and when that does not happen it leaves me feeling totally crushed. The basic fear for a 2 is being unworthy of love or being unwanted. It doesn’t matter what the relationship is, parent, friendship, spouse… I want to feel like I am needed, appreciated and loved. To do so, I often have an unhealthy side of my Type 2 push through, sacrificing my own needs to put others first no matter what. The more I reflect on this truth, I see the damage I am doing to myself.
I am not going to be everyone’s cup of tea or bucket of sunshine. I am not responsible for other’s feelings towards me. If someone is putting pressure on me to do things I know I cannot handle, not only is it unrealistic, but it is incredibly unfair. Boundaries are necessary and when you speak up for yourself, the push back is from the other person’s insecurities. I do not need to sacrifice myself to satisfy others. Having someone push me, minimize my pain and chronic illness and make me feel guilty for standing up for myself is wrong. Setting a boundary is for myself, my health and my family. It is telling others what I am willing to tolerate and how I expect to be treated. I can still be a very kind, loving, helpful person that also stands up for myself. I can show grace to others, but I also need to pour grace into myself.
It is hard to heal pieces of yourself when you lean into the lies that you are unworthy and unlovable for standing up for yourself. Others will push back and make you believe that the boundaries you are establishing are wrong or selfish, that by saying no and not helping every time you are asked, you are being disrespectful. That is simply not true. I am telling you – and I am telling myself – that our worth is not tied to the tasks we check off a list for others. Yes, we should love and serve others, but we need to do it in a healthy way that also respects our own needs. I am proud to be a “helper” and I am learning that I can still be myself without people pleasing my way through life.
Winning Entry to Receive $25,000 Grant
UPPSALA, SWEDEN, AND NEW YORK, NY, USA, June 17th, 2020: Orexo, a Swedish pharmaceutical company focused on improved pharmaceuticals and digital therapies, and Lyfebulb, a patient empowerment platform, announced that the Lyfebulb-Orexo Innovation Challenge: Digital Therapeutics for Substance Use Disorder is now accepting applications. The goal of the initiative is to seek novel digital solutions, in early stages of development, to address unmet needs in supporting successful, long-term recovery from alcohol and opioid use disorders.
The Innovation Challenge will take place in October 2020 and will be open to Patient Entrepreneurs—those who have been directly affected by a substance use disorder him/herself, or as a support partner for a loved one. Selected finalists will receive an invitation to pitch their digital solutions, virtually, to an expert panel of judges comprised of healthcare industry, medical and patient leaders. Competing finalists will be considered for possible partnerships with Orexo or for investment. The winner will be awarded a $25,000 monetary grant.
“The complex and intimate journey each person undergoes along the road to recovery for alcohol misuse or opioid addiction lends itself well for the patient and his/her care partners to become mentors or even innovators.” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Patient Entrepreneurs experience firsthand the gaps in existing treatments and are solving for better solutions to address those unmet needs. One cannot underestimate the role personal connections have in this space; to scale this approach and provide 24/7 support no matter where the people reside, digital technologies are critical tools for lasting solutions.”
“The COVID-19 pandemic has propelled the growth of the already increasing and prominent substance abuse patient group globally. This development is expected to continue over years to come, as the result of isolation and economic downturn. To fully address these developments, it is pivotal to understand the unmet needs of the patients on their road to recovery. Nobody can do this better than patients themselves and their care partners.” said Mikaela Odlander, Director of Digital Therapeutics at Orexo. “This innovation challenge will support Orexo in our continuous strides towards combatting substance use disorder through the use of digital therapeutics.”
Patient entrepreneurs may apply now through Friday, July 31, 2020 at 11:59 p.m. EDT at https://lyfebulb.com/innovation-award/orexo-2020. The competition is free to enter. Official eligibility criteria, and terms and conditions can be found on the Lyfebulb website.
About Digital Therapeutics
Digital therapeutics (DTx) deliver evidence-based therapeutic interventions to patients that are driven by high quality software programs to prevent, manage, or treat a medical disorder or disease. Digital therapeutics are used independently or in concert with medications, devices, or other therapies to optimize patient care and health outcomes. (As defined by Digital Therapeutics Alliance)
About Orexo DTx
Orexo DTx is the digital health arm of Orexo AB, a pharmaceutical company that develops and commercializes improved pharmaceuticals and digital therapies. The company addresses unmet needs mainly within the growing space of addiction. Orexo DTx was created in Q4 of 2019 and currently has three products in the pipeline, vorvida® for alcohol misuse, deprexis® for depression, and OXD01 for opioid use disorder, all in partnership with the GAIA group.
Orexo DTx’s mission is to redefine treatment of addiction by offering clinically validated digital therapeutics to ensure more successful treatment for patients and cost-effective solutions for payers. The digital products will be commercialized by Orexo DTx worldwide, with the U.S. as the principal market, where Orexo also commercializes its lead product Zubsolv® (buprenorphine and naloxone) sublingual tablets (CIII) for treatment of opioid use disorder.
Orexo is listed on the Nasdaq Stockholm Mid Cap (ORX) and is available as ADRs on OTCQX (ORXOY) in the U.S. The company is headquartered in Uppsala, Sweden, where research and development activities are performed. For more information about Orexo please visit, www.orexo.com. You can also follow Orexo on Twitter, @orexoabpubl, LinkedIn and YouTube.
About Lyfebulb
Lyfebulb is a chronic disease-focused patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental health, migraine and transplantation.
It’s 2:47 am when I first wake up to rush to the bathroom. As I look in the mirror, under the buzzing glow of the overhead fluorescent lights, I can’t help but feel trapped within my own body. All at once, I feel so confined to my internal reality, yet deep down, I am desperately scratching at the boundaries of my own body. I plead with bones, guts, and white blood cells to relax. I know I can’t get too worked up at my body because I don’t want to add any turmoil to the war waged inside of me. I’d like to credit my calm demeanor to rigorous Buddhist training, but really I just don’t want to make anything worse. I argue with myself and with my body like a bitter old married couple. In these moments, I am two different people, though really, there is just one of me, alone in the bathroom at 3 am. It’s an odd feeling.
It doesn’t help that my house is silent and that I am alone in a slumbering world. The unwatched TV sits silently screaming late-night infomercials behind a dark screen, my friends are all binging tonight’s latest dream, and I am so alone. I scamper back to bed and wrap myself in a bundle of cold sheets. Slowly, I drift back to sleep until eventually, I awake to an intruder breaching the tranquility of my bedroom. An icy wave of panic washes over me as I realize that the mysterious invader is under my pillow. Then, I reach over and hit the snooze button on my phone’s alarm. It is 7:21 am and I am no longer alone.
Over the past three years that I have lived with Ulcerative Colitis, I have experienced many challenges. Anemia, bleeding, pain, weight loss, and other symptoms have all forced me to confront health as a process rather than a given. The ick is one of the most complex struggles I have faced since my diagnosis. The ick strikes at any time and in any place. Whether it is 4 am or 2 pm and whether I am at home or on a rollercoaster at a theme park, the ick is there. The ick sticks to the moments that I spend in the bathroom in the dead of night and the moments when I am surrounded by my friends at a party.
The ick is a persistent, sickly, and grimy feeling that sticks to me. The ick is isolation, discomfort, and doubt all mixed together like the ingredients of a pot of gumbo. The ick marks me as sick, as a patient, and as abnormal. Sometimes, I wonder if I’ll ever get rid of it. Secretly, the truth is that I feel like the ick is a part of me. It makes me feel unclean and tainted. When I try to explain the ick to others, often I feel even more alone than before I said anything.
Eventually, however, I’ve discovered the cure for the ick. Sadly, it’s not removable with Clorox, or Oxy Clean, or any organic cleaner from Whole Food. Instead, and ironically, the ick is best treated by surrounding myself with supportive others. Today, by connecting with my community, and the chronic illness landscape, I have learned that I am not icky, or alone. while I am different and challenged by my health, the ick is not really what sticks to me. Instead, what sticks is what I make stick and what I choose to put out into the world. After all, together we are more than any disease.
On Wednesday 20th May 2020 the law around organ donation is changing to an opt out system in England. This basically means that all adults will now automatically be put on the list to be an organ donor. Anyone who is under 18, lacks the mental capacity to understand the law or who has not lived in England for at least a year before their death will be excluded from this. You can still choose to opt out at any stage if you do not want to be considered to be a donor. As I mentioned in my last post, when a young girl named Keira sadly passed away in a car accident, her kidneys, liver and heart were donated to a young boy named Max. Max and his family campaigned for this law change which is now known as ‘Max and Keira’s Law.’
According to gov.uk, “Three people die each day while on the waiting list. The new law will help to reduce the number of people waiting for a life-saving transplant.” If you look at some of the statistics around organ donation, the numbers are baffling. It seems that a lot of people agree with it but have not got around to signing up yet – around 80% of people in England would be happy to be donors but only 38% have opted in. I get it, when it isn’t something on your radar you might forget, or not make time to jump online to register. From Wednesday, it will be done for you meaning that hopefully more life saving transplants will go ahead.
Another statistic that really blows my mind is that half of families don’t give consent to their loved one’s organs being donated. This is usually because they don’t know the wishes or views of their family member. Death is such a taboo subject in most households and it isn’t really something people want to chat about over their roast dinner on a Sunday afternoon but is so important to have that conversation. If you don’t know how to bring it up, show them this blog post and get them talking! It might just save someone like me one day in the future. Families will still be consulted when the law changes and the final decision is made by them.
I think another important thing to take from the law change is that you can still opt out if you want to. This can be done at any time on the NHS website and there is absolutely no deadline to do it. Also, I have heard a lot of people say that they are happy to donate everything except their eyes because they find the idea a bit strange. Obviously, this is entirely the choice of the individual but I think it is worth noting that the NHS do confirm that “the eye is never transplanted whole. The cornea is transplanted, which is the clear outer layer at the front of the eye that helps the eye to focus light.”
So the law is changing and you will automatically be put on the register unless you fall into one of the excluded groups. You can opt out at any point by visiting the NHS website. Your family will still make the final decision so it is still really important to have a chat with them to let them know how you feel about the idea and also to know what they think as well. “Every day, someone in the UK dies in need of an organ, because not enough organs are available for transplant. But only 1% of people die in circumstances that would allow them to donate. Most people support organ donation in principle and would be willing to donate their organs after their death. However, many people do not make this decision clear either by signing on to the NHS Organ Donor Register or telling their family. The change in law better reflects what most people want to happen and will help save and improve more lives.”
I am so sensitive.
The word Diabetic is used to describe a person that has diabetes. It’s used in print all over the place and said by lots of people but I think it’s a label that puts the disease before the person.
Question: do any of these statements have a slightly more offensive ring to them?
You are congestive heart failure.
You are cancer.
You are a celiac.
You are gout.
You are thyroid disorder.
It’s not common for people to be identified as their disease or an event that happened to them but somehow, diabetes has an identity. This is a fragile line to walk and not everyone minds being called aDiabetic, but I think it matters for a number of reasons and it starts at the top. The people who should use the absolute most delicate and careful language, health care workers, often do not.
Here’s what happened:
I schooled an ophthalmologist last week. He’s a good guy but I was provoked by a medical assistant (MA) who worked way too fast and rough for my liking. Nobody likes to feel the impatience oozing from the person dropping stinging liquid into their eyes three times over again. Also, I was the only one in the lobby and somehow I had to wait 20 minutes.
How in the hell does that happen every stinking time even when I show up early?!
But wait, this gets worse.
MA and I are both wearing masks, which puts a barrier on reading facial expressions and I need to make those. if I had a song to my name it might be called My Face Don’t Lie.
Splash! Here comes the first round of stinging liquid bombs to my eyeballs.
MA rolls into the keyboard and finger-attacks with verifying questions/judgements and what do you think the leading question was? I’m sure you guessed right! An accusation in question form “you’re a Diabetic?”
“I am.”
Then the quick fire began:
MA: “controlled?”
“Yep.”
MA: “testing multiple times daily.” (not a question)
“No, I’m on a continuous blood glucose monitor.”
MA: “Pump.” (not a question)
“No pump.”
MA: “you’re a diabetic, type 1… How long?”
“26 and a half years and I’m a diabetes educator.”
I had to say it. It’s not my place to state my rank when I’m not working but I reckon it was necessary this time.
MA: “Aww, really? (Sympathetic sigh) Did you mean for that to happen?”
It’s true that I wasn’t thinking about this career path when I was a teenager but how I kept my composure after this question is a miracle.
“Yeah, I did. I’m a national educator with the JDRF on nutrition and exercise for people with type 1, hoping to change the way we view diabetes as positive rather than negative.”
Eat that.
I was a bit in the red and remember feeling warm and tingly all over because I wanted to shake MA awake so badly. I remember thinking why me, why here? This crap never ends, does it?
Regardless, my manifesto flew over MA’s head faster than a gnat in the wind.
Splash! Second round of stinging liquid eye bombs.
MA sits back at the keyboard and runs through a medications list, eye care history and some other repetitive stuff that was less painful as I blotted my eyes.
Splash! Final round of stinging liquid eye bombs.
I was directed to read letters off a screen to test my sight before finally having the room to dilate by myself.
I sat there looking like someone contemplating a robbery pondering what to say. Tightly folded arms and eyes wandering all over the room like a cat following a laser dot. I think on my next choice carefully.
Let the fun begin.
It’s my first time meeting this young, friendly doctor. We chat and I get called a Diabetic a few more times as I’m planning when to have my moment. Once he rolls up close to my face to check my vision I have him right where I want him.
“Hey doc, Anybody ever tell you that this MA isn’t their favorite?”
Doc: “No-no, everything ok?”
“Well, I’d like to send you something about language use and diabetes.”
Doc: “I’m sorry, I can talk to you much more high-level than this since you’re in the field.”
“Oh no, I don’t mean that. You can talk to me like a little kid especially when it’s about my eyes. I’m talking about how medical professionals talk to people about diabetes. Can I send you an ADA paper?”
Doc listened attentively as I explained why I’m sensitive to being called “a Diabetic” and why people with diabetes can feel ashamed by labels. We talked about patients with type 2 diabetes who might feel like being a Diabetic is their identity and the more they hear themselves referred to as a disease rather than living with one, the less likely they are to feel motivated to change.
Being called “a Diabetic” has an undertone that can mean sadness, depression, or failure for some of us.
It was a good talk. I walked out with doc’s email address in heroic stride.
I thought more deeply on my actions once I got to the car. Did I go too far? Was I a jerk for telling on the MA? Honestly, I can’t help it anymore.
I think we can all agree that calling people by a label isn’t very nice. Even if intentions are harmless, we should know better. Especially those working in chronic care who see what disease does to a person.
Forest Gump was very clear about one thing: he didn’t like to be called stupid.
He was a complex character who was misunderstood and his greater qualities were often overlooked by what people saw on the surface. If Forest let people call him stupid he may have started to believe them. His story would’ve been much different if he decided that being stupid was a reason to stop trying.
Instead, Forest let his challenges motivate him to show the world that he wasn’t stupid. See Captain Dan for the opposite example until he realizes that people calling him a cripple isn’t his identity.
Diseases could be talked about in a way that motivates people to tap into their inner Forest and use their weakness to find strength. All it takes is a twist of the tongue to help someone think differently about diabetes. It’s important that positive language comes from health experts but it begins with the way we talk to ourselves and about ourselves to others.
Secondly, be bold enough to correct an authority figure.
I give you absolute permission from one person using diabetes as a strength to another.
UPPSALA, SWEDEN AND NEW YORK, US, May 18, 2020: Orexo, a Swedish pharmaceutical company focused on improved pharmaceuticals and digital therapies, announced that it will partner with Lyfebulb, a patient empowerment platform, to work with substance abuse patients to identify unmet needs made more acute by the pandemic, and to innovate new solutions to aid successful, long-term recovery from alcohol and opioid use disorders.
The first initiative includes in-depth patient research to better understand current patient issues and areas of unmet needs primed for innovation. The second initiative, an Innovation Challenge for Patient Entrepreneurs, will allow patient-led companies in early stages of development to pitch their innovative solutions to a panel of experts for possible collaboration with Orexo.
“Those struggling with substance use disorders need our help now more than ever.” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Isolating times like these emphasize the need for more accessible, innovative solutions. We must push advancements in digital therapies forward, improving the quality of life and successful outcomes for all members of the community.”
Rooted in the belief that digital therapeutics are an integral part of the healthcare landscape, the initiative, and the partnership overall, supports Orexo’s venture into digital therapeutics for addiction, initially with alcohol and opioids.
“Orexo’s long-standing presence in the substance use space has enabled us to understand the complexity of addiction and how grossly underserved these patients are.” said Mikaela Odlander, Director of Digital Therapeutics at Orexo. “The treatment of substance use disorders, such as alcohol misuse or opioid addiction, requires a multi-faceted approach. Whilst we are making great strides in addressing this through our ventures in digital therapeutics, we are aware that many opportunities remain unexplored.
The partnership with Lyfebulb will support us in identifying unmet needs in our patient population and source ideas as to how to tackle them.
This endeavor is now more important than ever, as individuals are facing unprecedented challenges to stay healthy during times of isolation and economic downturn.”
About Orexo DTx
Orexo DTx is the digital health arm of Orexo AB, a pharmaceutical company that develops and commercializes improved pharmaceuticals and digital therapies. The company addresses unmet needs mainly within the growing space of addiction. Orexo DTx was created in Q4 of 2019 and currently has three products in the pipeline, deprexis® for depression, vorvida® for alcohol misuse and OXD01 for opioid use disorder, all in partnership with the GAIA group.
Orexo DTx’s mission is to redefine treatment of addiction by offering clinically validated digital therapeutics to ensure more successful treatment for patients and cost-effective solutions for payers.
The digital products will be commercialized by Orexo DTx worldwide, with the U.S. as the principal market, where Orexo also commercializes its lead product Zubsolv® for treatment of opioid use disorder.
Orexo is listed on the Nasdaq Stockholm Mid Cap (ORX) and is available as ADRs on OTCQX (ORXOY) in the U.S. The company is headquartered in Uppsala, Sweden, where research and development activities are performed.
For more information about Orexo please visit, www.orexo.com. You can also follow Orexo on Twitter, @orexoabpubl, LinkedIn and YouTube.
About Lyfebulb
Lyfebulb is a chronic disease-focused patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental health, migraine and transplantation.
See www.lyfebulb.com, Facebook, Twitter, Instagram, Lyfebulb LinkedIn, and Karin Hehenberger LinkedIn.
IBD is a pretty hard thing to deal with. As an invisible illness, people can’t see everything going on inside my body. My body is waging a war against itself and no one can see it when they first look at me. I’ve gotten quite a few reactions when I tell someone about my ulcerative colitis. A lot of people react really well when I tell them, asking about symptoms, what my day-to-day life looks like, what kinds of foods I can and can’t eat, what treatment options there are, etc. But there are always those that suddenly become PhD level experts in digestive diseases as soon as the words IBD are out of my mouth. And these “experts” tell me everything I’m doing wrong. A lot of people just don’t quite know what to say. There’s no right thing to say, there’s nothing that someone can say that is going to cure my IBD. But there are definitely things that people say don’t help. I made a list of the top 7 things you shouldn’t say to someone with IBD.
This article was published in 2020 as part of the International Fellowship Program for the Crohn’s and Colitis Young Adults Network. To learn more about CCYAN, visit www.ccyanetwork.org.
7 “Oh I know someone who has IBS! They changed what they ate and felt TOTALLY better!”
Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) seem similar in nature and they definitely have overlapping symptoms. But they are not the same disease. IBS only involves the colon, does not cause ulcers or lesions in the bowel, and is managed with medications and lifestyle changes such as diet and stress reduction. IBD, however, causes ulcers in the tissue of the digestive track. IBS is a syndrome, while IBD is a disease. IBS does not cause any inflammation, rarely causes hospitalization or surgery, the colon appears free of disease or abnormality during an exam, and there is no increased risk for colon cancer. With IBD, there is destructive inflammation that causes permanent harm to the intestines, the colon is visibly diseased during exams, and there is an increased risk for colon cancer. While both definitely impact daily life, IBD cannot be managed by just lifestyle changes. While people that say they know someone with IBS is trying to relate, it’s not the same. I have IBD and even in remission I still have IBS too. They just aren’t comparable conditions. See the infographic from the Crohn’s and Colitis Foundation for America comparing the two, below!
6 “You should stop eating junk food and try a salad! Your stomach probably just needs a vegetable!”
For some reason, my body does not like to digest a lot of healthy foods. Vegetables with hard rinds, salads, some fruits… my body does not digest it. For the most part, what goes in comes out without it being broken down. The pain associated with eating these foods is often unbearable. Even in remission, I have to eat raw vegetables and roughage sparingly. When I was flaring last year, I couldn’t even have little bits of lettuce on a sandwich. I was a frequent flyer of McDonald’s because, for some reason, I could handle junk food better than I could handle healthy foods. It got to the point where I would do anything to eat a salad. I missed apples and lettuce and cucumbers so much. People often told me it must be nice to just eat junk food and not have to worry about eating healthy. But the junk food I could eat didn’t have the nutrients I needed. And I missed veggies so much. Then there were the people that would tell me my IBD was probably just caused by junk food or could be treated by eating healthy. If eating a salad and never having French fries again meant curing my IBD, I’d do it in a heart beat. Unfortunately, that’s not how it works – and shaming me for eating the few things my body could handle just makes it worse.
5 “Can’t you hold it? You JUST went to the bathroom!”
No. I can’t hold it. When I was flaring, I was going to the bathroom within 5 minutes of eating anything. I was in the bathroom at least 20 times a day. And when I had to go, I had to go right at that moment. Middle of a store, an exam in class, driving down the road… whatever it was, I had to stop and run to the bathroom. Life would be a lot easier if I could just hold it. And crazy enough, I do know that I just went. That’s part of the disease, though. Frequent and urgent bathroom visits. Sometimes with no warning. Reminding me that I just went and making me feel bad for having to stop what I’m doing doesn’t make things move faster.
4 “But you were fine yesterday – can’t you just push through it?”
My IBD symptoms change day to day, sometimes even hour to hour. I can commit to plans and have to cancel 5 minutes before. I can look forward to something for weeks, only to feel sick an hour before I’m supposed to go out. And it is the worst. If I can push through it, I do. I made it through college and starting my first job. I was in the hospital for 4 days the first week of my job. I got out on a Monday night, drove two hours to my infusion center to get my first infusion, and then went to work the next morning. There is a lot that I push through. Sometimes, I need to lay in bed and be close to the bathroom and that’s okay. I hate having to cancel plans. I hate feeling so sick that I can’t do the things I was so excited to do. Not being able to push through it does not make me a bad friend or a flaky person. It makes me a wise patient because I know my limits and my body enough to know when I need rest and when to take care of myself.
3 “Have you tried reducing your stress? Maybe try yoga or something.”
While stress can certainly make my IBD worse, it does not cause it, and reducing stress does not treat it. My life can certainly be high stress. Being diagnosed with a chronic and incurable condition at 20 years old is definitely stressful, but I know how to manage my stress. If some stress-reducing yoga could stop the blood, the pain, the ER visits and hospital stays, and everything else that comes with IBD, I’d make a career out of it. But it’s not that easy. Knowing how to manage stress can help some symptoms during a flare up and help calm things down to a point. Stress management is not a cure for IBD and telling me to stop being stressed makes me more stressed.
2 “Why are you so tired? You haven’t done anything today.”
This is one of the most frequent things I hear. To an outsider, it’s true. I am absolutely exhausted all the time. I could sleep all day and lay in bed all weekend and go to work Monday morning feeling like I pulled a week full of all-nighters, but that’s what a chronic auto-immune disease will do. I had one doctor explain my fatigue like this: remember how tired you feel when you’re fighting off a cold or the flu? Like no amount of sleep will make you feel awake? You feel achy and worn down and your brain feels like mush? That’s how someone with IBD feels all the time. Instead of their immune system attacking a virus like the flu, it is constantly attacking itself – all day and all night. Those with IBD often have weak immune systems due to the medications they are on, making it more likely to get sick. Our bodies are fighting double just to function the way a healthy body can. So yes, I am tired all the time. I may have slept 14 hours the day before and had two cups of coffee, but I’m still tired and I could always use a nap. I wish I had the energy that a 21 year old should. That would mean I could go out and do what my friends can. However, I have accepted that my body has limitations and I need more sleep than the average person to function at the same level.
1“Just use oils! You need to stop pumping your body with all that poison!”
I will be the first to tell you, if an essential oil could make my immune system stop attacking itself, I would bathe in it all day and night. Sometimes, oils may help to an extent with headaches or nausea that come as side effects from medications I am on, but no essential oil or combination of oils will ever cure my disease. Of course I wish that something natural would work the way my immunosuppressant infusions do. Even a combination of 6 different medications at once did not help the way my current infusion medication does. It’s scary to have to pump a medication into my body every 6 weeks. Especially a newer medication that we do not know long term effects of. But it’s keeping me healthy and keeping me alive. And shaming me for how I am dealing with my chronic disease is never okay.
While all these are things I hear often and things that are definitely frustrating, I know they often come out of a place of not knowing how to respond and wanting to help. The most helpful thing someone can do is be there. Be there when I’m in remission and at my best, and be there when I’m laying in pain on the bathroom floor at my worst. Ask questions. Ask how you can help. Ask what my IBD means for me. Educate yourself. Don’t assume based on things you may have heard or things that work for a friend. In the end, be the kind of friend you’d want if you had IBD.
I was completely healthy and unaware of what it was like to live with any sort of illness. I was the annoying person who had never been prescribed antibiotics, never went to to the doctor, and never needed any days off from work. I wasn’t sick. Ever. Sitting here now, I can feel my heart beating in my chest, pumping the blood around my body, keeping me alive.
Except it wasn’t always my heart. It is her heart that keeps me alive.
At the age of 28, everything changed. My entire life turned on its axis. I had lived an incredible life so far and I was happy. I went to school and university, backpacked around the world, moved to London and worked hard, and had great friends and family. I was social, active and healthy, until I wasn’t. At the end of 2018, I started to get a chest infection. I carried on with the Christmas festivities but it wasn’t getting any better so I took myself to the doctor. They gave me antibiotics and sent me on my way. I carried on as normal.
As the New Year came, the illness intensified. I was suffering from vomiting, headaches, shortness of breath, and I was seriously lacking in energy. The doctors kept sending me away with more antibiotics. It was so frustrating I even took my mom in with me to try and get them to check for anything else. I had never felt so unwell and every time I tried to lie down to sleep, I would have a coughing fit. As time went on, I decided to stay with my mom for a while because I just couldn’t cope by myself anymore. I couldn’t even walk up the small driveway without stopping to catch my breath. Eventually, my breathing became so labored, so shallow, it was clear I needed more help. On that Saturday night at the end of January, we went to my local hospital.
As soon as they took my blood pressure and checked my heart rate, they immediately requested more tests. I was quickly ushered into a side room and a nurse put a cannula in my arm. Blood tests, an ECG and a CT scan came next. It was late and there was a lot going on around us. It is all quite a blur now, but my mom was sent home around 3 a.m. and they took me to the ward as a precaution. The machines were beeping and patients were crying out in their sleep behind closed curtains. I opened my eyes around 5 a.m. to see a doctor at the side of my bed:
‘Miss Sharma, have you ever seen a doctor about your heart?’
‘No.’
‘Have you ever had a heart attack before?’
‘No never!’
‘We think you may have had one…’
‘Oh… okay.’
What was happening? I could not understand how I got to this point. I was confused and exhausted. In truth, I was terrified and I wanted my mom. They took me up to the Coronary Care Unit and after a few more tests and readings, they reassured me I was not having a heart attack right at that moment and they didn’t think I had had one. During the doctor’s rounds in the morning, I was informed I was actually in heart failure. My heart was failing. Failing my body and failing me. They were hopeful, with a certain medication, I would be able to go back to work after a few weeks of rest and lead a ‘relatively normal’ life. I can’t really tell you what I felt at that point. I was numb.
A ‘relatively normal’ life wasn’t for me though and the universe had other plans. The drugs did not work and I crashed immediately. I couldn’t even get out of bed! That was it – the hospital decided I needed more care than what they were able to give me and they sent me to a specialist heart and lung hospital a couple of hours away in London. This was getting serious now and I could see the worry etched on everyone’s faces around me. The nurses had been absolutely amazing and I could tell they were all rooting for me. It was scary, but I was strong and determined. I had a lot more life to fight for.
My new hospital became home for four and a half months. It was a big, old fashioned building filled with some of the best doctors, surgeons, and nurses I could have asked for. I was put on an IV isotope drug, which made me feel so much better as it helped my heart pump the blood around my body. Nausea subsided and I got my appetite back. I made my room feel like home with photos, cards, and messages. I got to know some incredible people in the same situation as me. I had visitors most days, which kept me going throughout all of this. In my mind, I still thought after a few tests, I would be able to go home soon and get back to normal: I was both naïve and in denial.
I had test after test — echo, ECG, PET scan, CT scan, MRI scan, heart biopsy, right heart catheterization, x-ray, blood test, urine test, and probably many more. I lost over 20 pounds while the fluid was drained from around my organs. There were things to do every day and my team was about to leave no stone unturned.
I had test after test — echo, ECG, PET scan, CT scan, MRI scan, heart biopsy, right heart catheterization, x-ray, blood test, urine test, and probably many more. I lost over 20 pounds while the fluid was drained from around my organs. There were things to do every day and my team was about to leave no stone unturned.
The first night, I suffered from septic shock all night. Hot. Cold. Freezing. Hot. FREEZING. HOT. Boiling. Cold. I cried a lot that night. What else could go wrong? How could I cope with anything else? I was drained and I was tired of feeling like this. This kind of stuff didn’t happen to ME. Luckily, I was pumped full of antibiotics and after five days, they could move me back to the ward. I had shrugged off the negativity again and continued the fight.
After a small (two week) stint at home, I was readmitted again. The team wanted to see if I could tolerate oral medication for as long as possible, to extend my life. They took all the precautions necessary, even fitting me with a subcutaneous defibrillator (ICD) before I went home. I was so excited to be discharged but I was very weak and vomiting a lot from a reaction to the pain medication I was given for the ICD procedure.
The first week back in my own bedroom, I couldn’t get out of bed. I felt so sick again. I remember crying to my mum, ‘I can’t be sick forever. I can’t live like this.’ After a week, I had to go back to the hospital for a check-up and as soon as my consultant saw me, she knew things weren’t right. My liver was going downhill, my blood work was not where it should be, and they were worried. I tried to persuade them it was just a reaction to my last procedure. I had even worn makeup to make myself look better and less grey. But we all knew what this was leading up to.
I had another appointment a week later for a right heart catheterization – a procedure where a special catheter (a small, hollow tube) is guided to the right side of your heart. The tube is passed into your pulmonary artery. Blood flow through your heart is observed and the pressures inside your heart and lungs are measured. The results weren’t good and as expected, I was readmitted right then and there. A few days later, after a long meeting, a team of doctors came into my room:
‘We have decided the best course of action is to list you as soon as possible on the urgent transplant list.’
Rewind to four months previous and I was living my usual, healthy, happy life with no real worries to speak of. Skip back to my hospital room: URGENT TRANSPLANT LIST. To be honest, we knew it was coming by then. My brother was with me when we got the news and we were calm and collected. It was the only option I had if I want to live and I still wasn’t ready to give up on it. My brother and I have faced a lot of things together and at this point, we knew we had another hurdle to jump. My friend came up and joined us that day and we spent the day like kids eating fizzy sweets and laughing at silly things. It was actually a lovely day. I imagine I cried my eyes out when they left, but I only remember the fun I had with two of my favorite people in the world.
Courtesy of Hannah SharmaCourtesy of Hannah Sharma
I waited 6 weeks in total once I had been put on the list. I had had two failed ‘calls,’ where the heart had not been viable for me in the end. The Transplant Coordinator would come in and say there was a possible heart for me and I needed to nil by mouth in case it could go ahead in a few hours. They would come in with updates throughout the day. I would make a decision whether to tell my family now or when I knew it was closer to being definite. My family would make a decision whether they would make the two-hour journey up to the hospital straight away or wait until it was closer to being definite. And then the coordinator would come in and say, ‘I’m sorry Hannah, it won’t be going ahead today.’ It is so hard to try and explain the different emotions I went through on those days. I had been told I would probably have at least one call that didn’t go ahead but I still clung on to hope. I was also nervous and thought maybe I wasn’t ready for it, which made me feel guilty and sad for the person who had just died. I was happy there may be light at the end of the tunnel but I tried not to get my hopes too high. When it didn’t go ahead, there were tears and then exhaustion. There were calls to make and then food to eat and then long sleeps to be had.
Courtesy of Hannah Sharma
But then there was always the next day… the day the coordinator came in to tell me there may be a heart for me — her heart.
I had already been tipped off by my consultant a little while before. I had another infection and I was getting really poorly again. The whole week was a blur and on this particular day, I remember people coming in and out, taking out my lines, checking my blood pressure, and taking blood tests. At one point, I called my mum, my brother, and my friend to let them know what was happening. A bit later, it looked like there was a high chance of this going ahead and the coordinator asked me to shower and put the hospital gown on so I would be ready. My support squad decided it was time for them to drive over and they were with me by about 1 a.m. We all napped on and off – me on my bed, two on the chairs and one on the floor. The anesthesiologist and one of the surgeons came to see me at one point and the nurses on call kept checking in on us. I’ll never forget listening to Stevie Wonder’s ‘Superstition’ and ‘Proud Mary’ by Tina Turner as the sun rose in my hospital room the morning I got my new heart — her heart. I wasn’t scared. I was ready.
Courtesy of Hannah Sharma
The hardest part was saying goodbye to my family when we got down to the theatre but we were still laughing and joking the whole time. We had realized I had nail polish on my toes so my mum and a nurse had a foot each and were scrubbing away as I was being wheeled down! We hugged and kissed and I was wheeled into a small room where I was very quickly put to sleep.
Courtesy of Hannah Sharma
According to my surgeons, it could not have gone better. I spent two weeks resting, healing, and crying a lot. I had to learn to walk again with the physio team and I had to wrap my head around the copious amount of medication I would be taking every day before I could go home. The medication is slowly being reduced but I will always take certain meds in order to stay alive. The anti-rejection medication I take suppresses my immune system so it can’t fight against the foreign object, the heart, in my body. This, of course, has its own complications but I am in the constant care of my transplant team and will be monitored for as long as my shiny new heart keeps pumping.
Courtesy of Hannah Sharma
Just two weeks after surgery, I was being discharged to go home. GO HOME. Coming home was incredibly emotional. It was hard to leave the safety net and the family I had made at the hospital but it was beautiful to see everyone at home. I’ll never take it for granted again.
I am now ten months post-transplant and still a little in shock at everything that has happened. Now that we have a pandemic on our hands, it is hard to understand the world we live in sometimes. I just know I am happy to be on this Earth now, more than ever. I get to see my siblings and my nieces grow every day. I got to meet my nephew, who was born this year. I get to spend time with the people I love most in this world and create more beautiful memories everyday. I get to be an advocate for organ donation and I get to tell people my story and inspire them to register to be an organ donor. And furthermore, once they have signed up, I get to encourage them to have a conversation with their loved ones about their decision.
Courtesy of Hannah Sharma
It is so incredible to me I am alive because one selfless, beautiful woman donated her organs and her family was able to respect her wishes. The heart pumping inside of me right now was not mine to begin with but she gave me the best gift I could have ever wished for when she gave me more time to LIVE.
It is her heart that keeps me alive.”
Courtesy of Hannah Sharma
This story was first reported to Love What Matters by Hannah Sharma.
“If you have a half-bottle of something, then you are all set. Or good wine in a box — yes, there are such things. The bag-in-a-box technology is an excellent guard against oxidation, the primary fear after a partly consumed bottle. But if it’s just you and a regular bottle, just plan on drinking it over two or three days, no worries. The bottom line is: We are all doing what’s necessary in an unexpected predicament to protect the health of family, friends and ourselves. We are sacrificing, whether missing out on travel, sports, theater and other public gatherings. For some of us, that may mean spending time in physical isolation.” – Eric Asimov, Eric. “Wine is for Sharing. What Does That Mean in Self-Quarantine?” The New York Times, 16 Mar. 2020.
I woke up this morning, eager to read the Wednesday NY times, since it includes the Food section, which I enjoy for its reviews of restaurants, recipes and great interviews. Naturally, this week, restaurants were not the focus, but instead, recipes were as well as what you can do while at home. I was surprised to see the article about drinking wine at home, in isolation.
For normal, healthy adults (if there even is something defined as normal anymore), this may be fine, but for the many people who either suffer from addiction disorders or other chronic diseases, it is quite an appalling, and even dangerous message. Sitting at home alone and fearing this pandemic, since you may be immune compromised, on medications, or otherwise medically compromised, is tough. Not having routines that help structure the day, people to share thoughts and feelings with live, nor easy access to therapists, physicians, priests or counselors make life very difficult for all of us living with a disease that never goes away.
Portraying the option of drinking half a bottle of wine, or even easy access to purchasing a boxed version of wine, seems very irresponsible for a publication as reputable as the NY Times. It seems to us that there are a number of other options that truly increase endorphins and have real health benefits to combat the ill effects of social isolation that should be recommended over alcohol consumption. Alcohol is a depressant. Unless you ingest it continuously, which obviously causes poisoning and bodily damage of grave nature, there will be a down period very immediately post drinking. This depressive shift just cannot be good for anyone, especially when in isolation! In our mind, this guidance also goes for articles encouraging people to suddenly start eating cakes, cookies and ice cream in isolation to comfort themselves through sugar. Again, individuals with addictive behaviors will have difficulties stopping, and those with chronic diseases where sugar is not encouraged could be impacted near and long term.
At Lyfebulb, we aim to connect people with chronic disease around a message of hope and innovation. We encourage people to take control of their lives, as much as possible, and encourage and refer them to activities that build instead of break.
So, what should one do instead of opening a bottle or box of wine to drink alone?
Pick up the phone and call someone; they are probably lonely too.
Find a good exercise video and try a new routine. Lyfebulb Patient Entrepreneur Charlie O’Connell has developed a series called GlucoseZone, which offers live and on demand workouts with added access to diabetes coaches.
Test out new, healthy recipes (if you can find the ingredients!) Social media posts abound with great ideas as well as recipes on our blog, like this immune-boosting smoothie recipe here. Additionally, make healthy, easily digestible smoothies for the entire family with Lyfebulb Patient Entrepreneur Jon Margalit’s Complete Start, which is also shelf-stable and a great tool to keep on hand during this time!
Try new games that keep your mind active, Sudoku / crossword puzzles for example, or take up chess! Combine gaming with depression and anxiety reduction through Lyfebulb Patient Entrepreneur Keith Wakeman’s Superbetter App.
Connect with friends via new mediums: download our LyfeConnect App for webinars and articles and chats on topics focused on chronic disease.
