Caregivers: The Greatest Blessing of All

ibd-caretakers

As we wrap up Crohn’s & Colitis Awareness Week,

I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better.

Many of our IBD journeys

would be incomplete without creating awareness for our caregivers and the act of caregiving. You see, folks, caregiving takes courage; it takes guts! When most people disappear from our lives, our caregivers stick around and show us our true worth as human beings, as partners, as sons or daughters, and not just as sick patients. Caregiving takes a real, unconditional love for the person who needs care and help during major illness. And, in the case of my caregivers, it has taken true dedication and perseverance to care for me through 20+ surgeries and hundreds of hospitalizations and procedures. In many ways, for my two caregivers, giving me life again has become their modus operandi, and for me, their love and support has become my ode for survival.

The thing is when we are young and chronically ill, it is next to impossible to ask for help. It makes us feel useless and ashamed that we can’t be as able-bodied as the rest of our peers. But to have two caregivers who swoop in every time, like the guardian angels that they are, is truly my greatest blessing. Thank you, Mom, and thank you, Anand, for being my two rocks. Every time I have wanted to give up, you have encouraged me to press on, insisting that my existence matters oh-so-much. So, if there is a single reason as to why I have kept fighting and facing this monster of a disease, it’s you both. You are my lifeline, the embodiment of love, and truly, my entire universe.

So, own your Crohn’s,

own your need for tender love and care, for there is nothing wrong with being taken care of sometimes. We too will have the opportunity to pay that kindness forward one day in our very own ways.

**This blog and my advocacy work are an extension of the love and support I’ve received from my caregivers over the years. It is an act of paying their compassion and humanity forward to you all, my followers and supporters. I dedicate this blog to my mother, my husband and my late father who fought Crohn’s Disease and colorectal cancer so valiantly and passed nearly 27 years ago. My IBD journey would be incomplete without the three of you.**

Science, Technology, Investor Reception

“How Patients are Driving Innovation in the Future Healthcare Environment ”

Dr. Karin Hehenberger is the founder of Lyfebulb, a business focused on bridging patient communities with industry and providing a strong voice to people living with chronic disease by empowering patient entre-preneurs. Diagnosed with type 1 diabetes at an early age, Dr. Hehen-berger has dedicated her life to helping others impacted by chronic ill-nesses. Her personal history with diabetes as well as its consequences, which required kidney and pancreas transplants, provide Dr. Hehen-berger with an understanding from a patient perspective as well as a med-ical professional. It is from those experiences both as a patient and as a doctor, that Dr. Hehenberger was motivated to create Lyfebulb.

Wednesday, October 25, 2017
8:00pm

Greehey Children’s Cancer Research Institute (GCCRI); 8403 Floyd Curl Drive, San Antonio, TX 78229

Source: UT Health San Antonio

Press Contact for Lyfebulb: 
Shepard Doniger
BDCG, Inc.
561-637-5750
sdoniger@bdcginc.com

Google Works on a Glucose-Measuring Smart Contact Lens

Although smart wearables hit a plateau in 2016, it won’t be long before the market picks up again as research predicts that manufacturers will be looking at new ways to innovate wearables in the coming years. In fact, data presented by CCS Insight revealed that the wearables market will be worth $25 billion by 2019 as demand for health-focused sensors and technology is expected to grow further.

Wearable technology will branch out past the current smart headsets, smartwatches, and even fitness brands, as the next wave of devices will be more focused on specialized health assistance.

A particular long-awaited wearable device on the market is Google’s smart contact lens. The search giant and pharmaceutical company Novartis teamed up to develop the first smart contact lens that is said to assist patients with diabetes as well as those with eye problems. It is a contact lens with a built-in microchip that is able to measure the glucose level of patients non-invasively and correct eye issues, respectively.

The technology

While the world welcomed the emergence of smartwatches on the market, Google surprised the industry by announcing that they have plans to work on a smart contact lens that can monitor blood-sugar levels and correct vision in a new and innovative way.

The idea was a brainchild of Brian Otis, a former electrical engineering professor and a team leader at Google. His research group wants to take advantage of the possibility to shrink computer microchips, wireless antennas and other parts of the smart contact lens to ensure it won’t interfere with the user’s view.

Eye-care firm Alcon, a unit of Novartis, had licensed the technology from Google and sought regulatory approval of the device from the DFA. The Switzerland-based company will also be the one to produce the lens.

“The eye-mountable device is mounted on the pedestal such that the posterior concave side contacts the second end of the pedestal and the eye-mountable device is elevated from the base of the container,” reported Tech Times.

Stiff Competition

While the idea is extremely unique, Google needs to work faster in releasing their own smart contact lens. Apparently, another company is already working on producing the same technology and it will be compatible with their rival tech manufacturer, Apple.

Medical supply company EPGL also intends to develop a smart contact lens with compatible apps for the iOS platform. The technology will be projecting augmented reality applications to the user’s eyes.

While many predicted that Apple is working on a VR headset, CEO Tim Cook clearly feels that AR will be bigger than virtual reality and they have been working on it ‘behind the curtain’ for quite a while now.

Some industry experts even suggest that Apple were already making their recent handset, iPhone 7, ready for AR or VR head-mounted devices. It is believed to “foster wireless technology” with the introduction of the EarPods, which will power most future wearables in the coming years.

Although a lot of consumers were initially disgruntled by the removal of the device’s headphone jack, it remains one of the most popular handsets today with an overall rating of 4.1-star by O2 users, surpassing the rating given to other Android smartphones.

As Apple continues to focus on AR, it seems a smart contact lens by EPGL running iOS apps will certainly add competition to Google’s upcoming release. Who will dominate the market in 2017, remains to be seen.

Delays in development

Back in 2014, after the news of the partnership was revealed to the public, Novartis CEO Joe Jimenez mentioned that he hoped to see the smart contact lens released on the market within five years or so. He was then reported in 2015 saying that they were on track to begin testing in 2016.

However, a representative from the pharmaceutical firm recently revealed they had done away with their 2016 goal of testing the technology and their timelines have had to be moved back further due to unprecedented delays.

“It is too early to say when exactly human clinical trials for these lenses will begin,” a Novartis spokesperson told Reuters. “This is a very technically complex process and both sides are learning as we go along and will provide updates at the appropriate time.”

It is still unclear when they will start testing the technology. However that doesn’t mean that there isn’t anticipation for the new innovation as Google continues to aggressively explore the possibility of a glucose-sensing lens after their successful meeting with the FDA, the market is waiting for its arrival of what could be a groundbreaking piece of tech.

Exclusively written for Lyfbulb
by TechJeneration

A Spot of Frustration

My son is now 18, but at the time of this original post on A Spot of Hope, he was only 17. Andy was diagnosed at age 4 with psoriasis and age 5 with juvenile psoriatic arthritis. Life has been a roller coaster ever since, especially when it comes to pharmacies and insurance. I’m sure so many of the chronically ill, but chronically fabulous, readers can relate to what happened back in April. It’s a never-ending battle.

Dealing with pharmacies, insurance and lack of respect has me feeling frustrated!

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By the time my kid gets his biologic medication delivered, he will have been one month without taking it. No wonder he wants to sleep all day and has a bad case of brain fog! (Oh wait, maybe that’s just being a teenage boy…)

Anyway, one thing is for sure. He’s hurting. Don’t let his attitude fool you. He hides his pain well when it comes to his psoriatic arthritis.

So, why has it taken so long to get the medication? It’s been the perfect storm of mishaps that started nearly four weeks ago.

First, the boy didn’t tell me he was out of medication. We’re trying hard to transition him to the realities of college life and that his parents won’t be there to order his medication or administer it. So far, this life lesson could be going a lot better.

Next, I knew we couldn’t get the medication refilled without getting his labs drawn. I took him to do that, but the standing order script had expired. Luckily, the hospital took pity on us and gave him a courtesy draw.

The next day, I called his doctor’s office and spoke with a nurse. She said that she needed his lab results before the office would refill the medication. I explained that the labs were drawn yesterday and that his general practitioner who also receives a copy of the results had already called and said everything was normal. This did not satisfy the nurse, and I was told that I would need to call the hospital to get the results faxed to her. Unfortunately, I could not do that at the time because I was on my way out the door to an important meeting. She said it wasn’t her job to call and track them down, so we’d just have to wait until after the weekend.

Days went by and we were still waiting for some sort of update. That finally came with a call two weeks ago with Andy’s regular nurse. — Did I mention how much we love her? — She said the results finally updated in the system and she was refilling the prescription for him.

After waiting days for call from the mail-order pharmacy to schedule a delivery, I finally called them. The representative told me that they never received a new script, but there is still a refill left on his old script. Well, I tell her that’s not true because each time the script is written for three months only with no refills, and he gets a three-month supply delivered. Guess what happened at that exact moment? The new script just popped up on her screen. The doctor’s office must have just sent it over right then!

Really? How dumb do you think I am?

I wasn’t in the mood to play games or argue. I just sighed and said to fill it as soon as possible. But that wasn’t going to be possible. Why? Because we need a new prior authorization for the insurance!

The pharmacy representative assured me that they would be able to get the prior authorization and still have the medication delivered on Saturday. But, just in case, they would call if they ran into any trouble.

Needless to say, Saturday came and went. No medication. No phone calls.

No delivery on Sunday. After all, it’s Sunday.

No deliveries on Monday because the medication needs to be refrigerated.

No delivery on Tuesday.

I called early this morning to find out when this medication was scheduled to arrive. You won’t believe this coincidence! At the very moment I was on the phone with the pharmacy representative, the prior authorization came through!

Again, I wasn’t in the mood to play games. I just want the medication.

So, even though the medication hasn’t been delivered yet, I’m very hopeful — maybe naively hopeful — that it will arrive tomorrow. That will mean he’s been without his medication for nearly four weeks.

Every stage of this, there was a problem. I can be quick to blame Andy for not altering me sooner that he was out of medication. And, I can find fault with the nurse and the pharmacy. And, yes, I can even blame myself for not following up sooner. But, to do any of that would only prove fruitless.

The real problem lies in the big picture: The whole health system is a nightmare.

How can I transition my 17-year-old to take care of his own health in just a few short weeks when he turns 18 if I still haven’t learned to completely navigate it in the past 12 years?

I only hope that Andy plans ahead, asks many questions at every stage of the process, and has lots and lots of patience. That seems to be the only way to get through all of the red tape and nonsense.

And to think, he gets to do this all by himself in three months. Woo hoo!

Love in the Time of Ebola

As the Ebola outbreak continues to spread, and the number of healthcare workers directly involved continues to increase, my awareness of the very real possibility of coming in direct contact with this virus and a nurse’s role in terms of managing it continues to grow. Working in one of the busiest emergency rooms in NYC with heavy traffic from many of the major international airports, coupled with the news of various American healthcare workers contracting the disease, I would be lying if I said the Ebola virus hype did not present me with my own set of fears. Given the countless unknowns that go along with this virus, fear of it is more than understandable. While the unknown can be frightening, it was incredibly helpful for me to remember that as a society we are still learning about the prognosis and treatment of this disease here in America.

As we gain more experience with managing this disease, we continue to see the immense benefit of early detection, enhanced medical technology, prevention by treatment, and proper sanitation conditions conducive to managing this disease. The article “3­ Year ­Old ­Ebola Survivor Proposes to Nurse” really moved me in a way that made me think so deeply about the bigger picture. It strengthened my understanding that despite the fear and unknown surrounding this disease, these patients require and deserve a significant amount of care, and that stopping the spread of Ebola at it’s root is the best way to prevent it’s migration to other countries, including America. The article so vividly depicts just how much of an impact nurses can have on the overall well­ being of patients. Kallon, the nurse who cared for the boy (Ibrahim), similar to all of the healthcare workers recently portrayed in the media after acquiring the Ebola virus, who so selflessly put themselves at risk to care for patients with this potentially fatal disease. These doctors and nurses made it so their patients would not have to suffer alone while also playing a huge role in further preventing it’s spread. All three of these nurses are inspiring examples of how compassion and altruism, and operating from fact rather than fear, are essential to the well being of humanity. Kallon makes it so the boy feels well cared for and loved throughout his stay at the hospital. She lifts his spirits, improving his mentality and giving him hope. She seemingly takes on the role of a parent when the boy loses his mother and is unable to see his father.

She provides him with safety and security at a time when both of these things seem far away. She gives him the mental strength to fight this disease through her love and kindness. As nurses we do far more than deal with disease. We care for the people behind the disease. Kallon’s persona exemplifies that of an excellent nurse. She did not just give care by working to improve symptoms but also provided them emotional comfort at a time of suffering. Ibrahim’s heartwarming proposal goes to show what a special connection he felt to this nurse and how well he seems to be doing after surviving the Ebola virus. This article clearly articulates the importance of excellent nursing care and shows the true essence of the healthcare worker for overall prosperity.

http://www.npr.org/blogs/goatsandsoda/2014/10/17/356402872/3-year-old-ebola-survivor-proposes-to-nurse?utm_medium=RSS&utm_campaign=news

Managing Pain Effectively

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It is rare that we see a patient come into the ER that is not experiencing pain to some degree.  Pain is the body’s way of telling us that something is not right. Whether chronic or acute, when pain becomes unbearable our first instinct is to find relief. But where is the best place to seek help when the pain strikes? Unfortunately this question is best answered on a case by case basis as there are numerous factors that come into play.  It is not a question that should be taken lightly either, as pain (whether an acute episode, or an worsening of a chronic condition) can certainly be indicative of a medical emergency. In my personal opinion it is always best to seek help from a healthcare provider with even the slightest inkling that something could be wrong. Healthcare professionals in the ER do their best to find the source of the pain, fix it, and prevent further pain from occurring as efficiently as possible. Unfortunately, ER wait times (especially in this city) can leave a patient in pain for far longer than is necessary or acceptable.

If pain does land  you in the ER, there are certain things that can be beneficial to know to effectively manage your pain.  Giving a detailed accurate history of the pain is important in terms of treatment. In order to give a detailed and accurate history, be sure to tell your physician the length of time the pain has been present, exacerbating and alleviating factors as well as the location, severity, and quality of pain a Certain pain medications and comfort measures may work more effectively for some ailments than others.  The most important word of advice I can give is — advocate for yourself. You know your body better than anyone.  If you know a pain medication, or  dose is not going to work or has worn off, say something.  More often than  not, the squeaky wheel really does get the grease, and nobody should have to sit in pain unnecessarily.

Chronic pain is often so agonizing that it negatively impacts every aspect of life. For those living with chronic pain, relieving it is not as simple as receiving a generic medication.  When it comes to chronic pain management, it is important be proactive as it can be  difficult to seek help from urgent care centers, primary care physicians and pain management centers during off hours and holiday times. It may be wise to have your pain monitored  by a specialist who  can provide adequate coverage for times when you know an ER visit is not necessary, but the pain has become  unbearable.  Pain management specialists are able to provide suggestions for alternatives to medication such as acupuncture, breathing exercises, and certain types of exercise. Specialists are meticulously trained to know what works best for specific types of pain, how to avoid over or under medicating, and are able to  provide the best pain management while considering other medical issues the patient may have.

Seeking relief and answers regarding pain issues (no matter what type, quality or quantity) is always important. Pain is subjective and remembering to advocate for yourself if you feel something is not right can make or break certain outcomes in terms of your health.  I am a firm believer that as unique individuals we know our bodies better than anyone else.  Following intuition, even if a textbook or  doctor tells us differently, may  not only alleviate pain but could potentially be life saving. While the conquest of pain management f can be an agonizing process, the use of the proper resources and knowledge  of how to  ask for what you need can make it  less painful. 

Edited by: Lyfebulb

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