We are not always given choices about what we can and cannot change in life. The sun rises and sets. The tide rises and falls and good and bad things happen all around us and we are but one person in a sea of billions.
Given the Global Pandemic of the Coronavirus it can be difficult to maintain hope when 24 hour news focuses all day and night on what is going wrong and the problems we do or may face.
In reality, life has been on this planet for billions of years and will continue long after we are all gone in some form or another. I myself believe in God and find it helpful to pray and find that faith does improve both how I feel and help me to always remain hopeful versus embracing despair.
Here are some suggestions to embrace hope and fight despair:
Spend time around positive people (follow CDC guidelines and social distancing of course)
Speak to friends or family on the phone
Read a positive book
Read a religious book
Repeat the Serenity Prayer
Exercise – yes this can be done indoors
Take a nap
Watch a favorite movie
Listen to music
Play a board game
Remember that each moment your mind can be thought of as moving more toward the positive or the negative and that you have a choice in how you talk to yourself and how you interpret the world. Do you know any optimistic people. Try to be like them when you feel stressed, it is amazing how some people stay positive no matter what.
As over 6 million people travel to be with loved ones this week according to the news this morning; I started thinking about the difficulties of celebrating Thanksgiving with Crohn’s Disease – a disease that by definition makes it hard or impossible to eat at time because Crohn’s Disease causes inflammation and pain potentially anywhere and everywhere in the digestive tract (esophagus, stomach, small intestine, large intestine/colon).
I am a survivor of multiple surgeries thanks to Crohn’s Disease and I give thanks to God and to my family that I am still here and alive to celebrate this week.
Here are some general guidelines to help me through Thanksgiving with Crohn’s Disease
Be thankful you are not in the hospital or having a surgery
Be thankful that you are surrounded by family that loves you
Eat Thanksgiving food according to how I feel, if I cannot eat at the dinner table, then enjoy the company of those around me, and do not eat or have an Ensure.
Rest activity with balance. If I need to go take a nap and rest more than others – there is good reason, I am sick with Crohn’s Disease and take a chemotherapy drug for Crohn’s and a biological infusion and this combines to feeling bad, being in pain, being exhausted, and being disabled
Thanksgiving meal is just another meal – The people, saying thanks, and the celebration is what matters
Vitamin D is a vitamin that is essential for optimal functioning and health along with bone structure and bone health. We have all heard that. But, in fact Vitamin D is a fat soluble vitamin that acts as a hormone and this book “The Vitamin D Solution” is a great source of information on how to “Cure Our Most Common Health Problems”
I just completed reading:
The Vitamin D Solution: A 3-Step Strategy to Cure Our Most Common Health Problems Paperback – February 22, 2011
Vitamin D is produced in the skin when you have direct sunlight of sufficient intensity.
First, if you living anywhere North of the Latitude of Los Angeles California then you will not be able to obtain sufficient sunlight for up to 6+months per year to enable your skin to produce Vitamin D.
Do not worry, you can produce enough Vitamin D during the sunny months.
I looked into this book after learning how common Vitamin D Deficiency is with Crohn’s Disease.
Supplements can supply the body with Vitamin D; however, in my case I am unable to take the Vitamin D supplements because I cannot digest them due to my Crohn’s Disease. Therefore, I was pleased to read this book to obtain knowledge about obtaining my Vitamin D through small amounts of sun exposure.
Check with your doctor before making any changes in your sun exposure habits or taking any supplements. This is not medical advice, you should always consult with your doctor before making any health related changes or decisions.
I have extensive education and training in behavioral management and treatment for insomnia as a clinical psychologist. Here is some general educational information about behavioral tips that have been proven to help you sleep better!
Skip the naps! Or limit them to less than 30 minutes.
Get rid of the clock or turn it around – stop checking the time!
Make your room comfortable, dark, and quiet when you sleep.
Tip: Try earplugs and light blocking window shades
Wait until you are tired to go to sleep
Wake up at the same time every day
If you cannot fall asleep within 30 minutes, get out of bed and read; then go back to bed when you feel tired.
Do not spend time in your bedroom except for sleeping in your bed. Watch TV, study, eat, etc.. in other parts of your home
Set-up a bed-time routine and stick to it!
Sleep happens when you relax so instead of “trying to sleep” instead notice that it is nice to be resting and sleep will happen.
Disclaimer: If you are having difficulty sleeping, this could be a sign of a medical condition, so first thing you need to do is to discuss your problem sleeping or feeling tired with your primary care doctor. For example, you may have sleep apnea and not know it and this and other medical conditions can be serious risks to your health if left untreated.
When you read the following article your view might depend on your knowledge of statistical methods, false positives, false negatives, and the fact that there are too many mediators and moderators (variables) that could also explain why certain people do not respond or “get better” with certain Crohn’s Disease Medications such as Humira or Remicade.
Getting better is not all or none. This news article that summarizes the journal results fails to mention that any symptom improvement at all in a patient with Crohn’s Disease most likely will IMPROVE Quality of Life.
“Remission” clinically is not the patient telling the doctor that they feel better. Instead remission involves colonoscopy, CT or MRI, blood tests etc. However, it is common and very possible that a person can feel “better or worse” than the test results indicate.
Due to all the potential variables we do not know about I find it a potential dangerous slippery slope for Doctors or Drug companies to deny trying a treatment like Remicade or Humira based on a genetic study. We do not know all the genes involved and even if we do – Genetics always explain about only 50%, the rest is environment, and other social and demographic factors that are UNIQUE to each person.
Crohn’s Disease affects all three layers of the intestine and current tests only look at the outer (on an x-ray, CT, or MRI), or inner (colonoscopy). The middle layer – which could be causing disease symptoms and disability is not being looked at.
Also, the small intestines often cannot be directly looked at on the inside layer even due to narrowing the colonoscopy must stop.
Trust yourself and find a good doctor you trust and work together as a team to find an individualized plan that will work.
Research looks at how events can be predicted in groups – it is unable to predict how an individual will react. Take a look at all the possible side effects or helpful effects of any medication and each individual person will have variability in what happens to them to one degree or another. For example, some people might feel nausea, others might feel fatigue, and another person might feel great!
This is my personal opinion and general scientific information. It is not intended to and cannot replace any advice or recommendations by your healthcare providers. You as a patient should follow medical advice and work with your doctor to make sure your healthcare needs are being met.
Many chronic health conditions require expensive medication for treatment just to allow for survival. Many would not have been able to access infusion treatments / other medications were it not for the financial assistance that has been provided by the drug companies themselves and other charitable organizations. Even with great health insurance including Medicare the patient is often responsible for 20% of the cost of a treatment or a copay for a medication. With medications such as Remicade, Humira, Insulin, and the like, that could mean hundreds to thousands of dollars each treatment. There is help! Read below.
Now many pharmaceutical companies have their own copay support programs.
I find the following website to be a great tool to find financial / copay help for almost any prescribed medication: Visit the link below:
If you are not able to afford your prescription medication for your health condition then please consult with your doctor’s office and they will be able to help you as well. It is a great idea to stay in contact with your prescribing doctor about anything regarding the medication or treatment.
Also, with open season coming up for the Healthcare Marketplace, you can always try to pick a healthcare plan that will cover more of your medication / treatment. Discuss with your healthcare provider and/or insurance broker.
Best of luck out there and I hope you can afford your medication!
I have heard it, you have heard, “oh no, it is raining outside, that ruins my plans… or why does it have to rain…” I have noticed a trend that many people make assumptions about the ability of the weather to “ruin” a day. This is not helpful thinking or entirely logical. Whether it rains or shines I can still enjoy my day and so can you. Reading and watching movies are enhanced by rainy days. Rainy day naps are wonderful. In fact, I particularly enjoy the rain, and that is because I decided I like the rain.
Wait… you can decide to change your thinking?
Yes, you can!
There are many years of research that supports the use of changing out thoughts to help influence our behaviors and emotions and in a positive manner. This school of thought did not begin with psychologists. However, currently if you want to do some reading look into Cognitive Behavioral Therapy (CBT), try to learn your new ABC’s from Rational Emotive CBT, or one of my favorites read about ACT (spoken like the word to “act” in a play), standing for Acceptance and Commitment Therapy.
I will skip over a lecture and simply state that it is possible to change one’s actions or behaviors, or thoughts and it can be good for you and modify or alter beliefs that work better for you or fit with your values.
So, I value being outside in nature. Rain is part of the natural cycle of weather and is important for LIFE, so therefore I like rain as well.
When I walk in the rain I think about those great times playing sports in the rain with friends or swimming in the ocean during a small rain storm as it made the waves bigger. Perhaps next time it is raining, instead of thinking the rain is a nuisance you will think – the rain is an opportunity to experience life, and by the way – if you get wet you will dry, and if you do not want to get wet you can use an umbrella – just beware of thunder and lighting and be safe!
I hope your day today is serene and peaceful as the scene below! Read on to learn more about your fellow humans! Below the surface many are suffering right now!
Today is a day celebrated by many unsung heroes around the world. People like me are in pain due to their chronic illness. They are your weekend warriors and you did not know it. In life we can not really see what is really going on with someone by looking at them. Have you ever seen a duck swim in a pond? They are graceful on the surface just gliding along! But below the surface they are paddling and moving around so fast – it is organized chaos.
So today when you walk around and see your fellow human being try to imagine that the person across from you might be going through something and you probably would not know. I think an important question to ask is: How is your health? How are you feeling? It does give the person the opportunity to return the social grace or really share. Also, people who do not feel good, are in pain or suffering often do not ask for help. When you say, call me if you need anything – most do not call
Offer specific help or ask, what is difficult for you to do? – Then help! If we all pay it forward it will make a difference!
Write your doctor’s appointment down in your calendar so you know ahead of time when you will be seeing your specialist or primary care doctor.
Keep a list of any medical appointments, hospital visits, or changes in medication and bring this to your appointment.
Bring in a list of your medications to your doctor’s appointments. Some physician offices will ask you to bring in a bag of all your prescribed and over the counter medicines. Be sure to ask your doctor’s office!
*****Write down a short list of a few concerns you want to discuss during your visit! For example if you have Crohn’s Disease:
Pain in abdomen (keep a daily log regarding your pain and what you ate, this can help your doctor)
Tonight Rosh Hashana begins and with it the New Year of 5780 on the Hebrew Calendar. Shana Tova to all my fellow Jewish People around the world and thank you to Israel for being a beacon of freedom and hope for all Jews. May all Jews have a Happy and Sweet New Year! My wish for this year is to have the world recognize and globally stand against antisemitism.
In a short period of time humanity has moved our planet Earth toward dangerous and globe threatening Climate Change. In terms of fixing a problem it is best to be proactive and not reactive. Since we are not able to go back in time of course the approach at the UNGA is a reactive approach. The good news is the major nations and businesses have ideas to move toward being Carbon Neutral by 2050/mid-century. Keep in mind that CO2 is one of 6 major gases that contribute to Global warming (OTHERS include: nitrous oxide, hydrofluorocarbons, perfluorocarbons, sulphur hexafluoride and methane). So CO2 focus is important but not enough!
In reality being “Carbon Neutral” can involve many possible situations. Some definitions in fact involve an entity contributing to CO2 emissions and “buying carbon credits”. By visiting this site you will learn more about Climate Change, Carbon Neutrality and be able to have the links to calculate your own carbon footprint.
My experience with Crohn’s Disease and knowledge of other disease processes help me to understand why focusing only on Carbon is not enough. Take the immune system for example – it is responsible for keeping us alive, but also responsible for being the reason for auto-immune diseases such as IBD (Crohn’s Disease and Ulcerative Colitis). Also, when we look at HIV/AIDS we learn an important lesson on how to combat something that is complex and threatening to people as individuals and globally. To successfully treat HIV/AIDS and Crohn’s Disease/Ulcerative Colitis there has been a failure to achieve remission with a single drug or single target approach. Instead, the positive results have come from using multiple drugs/methods that have distinctly different pathways. So it is the same with Climate Change. If we limit ourselves to focusing on Carbon we will not be successful. We must combat the other five major gasses and also look at why we have the problem and we can do within society and culture to change our values so that they are consistent with prolonging the life our planet and life as we know it as human beings.
Thank you and may we all continue to come together as a world and take proper and sound action!
Today is a painful day for me, my abdomen and specifically my intestines are inflamed and angry. That is a metaphor, really my Crohn’s Disease decided to try extra hard today and it won. So I ended up taking two long naps and more time in the bathroom being sick and basically it was a boring day. Also, I do not care about the Emmys. I would rather watch no TV or anything else. Better idea, now, in fact in my mind, I am envisioning that I feel good, it is a cool and sunny day and I am out on the water in a sail boat – out on the ocean and enjoying every minute!
Instead of fighting against the disease- the suffering, I went with it today and listened to my body. I told my family I am sick and do not feel good. I slept through meals and ate when and what I could. These days are part of my chronic illness and more often than I would like.
I chose to not push myself and pretend I felt good because that does not work. Having a chronic illness is like having a bank account. There is a set amount of money/energy/ability to tolerate pain in said account. Well today I was broke, so why overdraw the account?
Perhaps tomorrow my luck will improve and instead of overdoing I will take it easy in terms of pacing my activities. Pacing is an important concept for chronic illness as it also is in many other activities including sports.
Imagine you are running a race every day and some days you feel more able to run than others. It’s a miracle, this one day you feel a little better. Do you increase your pace to a sprint or maintain the walk/jog? If you decide to sprint you feel good in your accomplishment. Then you wake up the next day and your feet hurt and you have to rest for the morning. If you had “paced” yourself – the next day would also be fruitful. This life lesson is one that can be faced daily. Essentially, what is my pace today based on how I feel? Best of luck to everyone out there in their daily race and try to find the right pace each day!
The Mediterranean Diet can change your life, help you feel healthier, prevent disease, help you lose weight and keep the weight off, improve your quality of life, and possibly live longer too. What we eat affects how we feel and also impacts our health. This is so important in wellness and with chronic illness. What we do everyday is important as well. Taking the time to make food at home is difficulty with the modern workplace requirements. However, I have decided to work on improving my quality of life by looking at my diet.
The Mediterranean Diet has been studied the past 50 years and the benefits are undeniable. I will post a few of the links and book names for research and recipes. I did research on the Mediterranean Diet back in 2010 through 2013 when I published a Medical Brochure on the Prevention of Alzheimer’s Disease through lifestyle changes. A major part of the research emerging at the time was that the Mediterranean Diet is probably related to prevention of Alzheimer’s Disease. Well now the facts are in years later and the Mediterranean Diet helps with many health conditions including Crohn’s Disease.
Keep in mind, this is not a diet in the sense that you are doing this to lose weight. You will possibly or even likely be healthier. However, the Mediterranean Diet is a lifestyle change that includes increased physical activity and changing what you eat and your thought process about food.
About one week ago I starting thinking about my reasearch on the Meditteranean Diet and decided to start eating that way to see how I feel. I discussed it and did some updated reading and began the diet. I will tell you that I believe I am noticing some improvement. However, do not use this blog for medical advice, go ahead and speak to your physician about your diet and food intake.
Research on the Mediterranean Diet has provided evidence for:
A new study published in April – see below – Mediterranean Diet Improves Quality of Life and may reduce disease activity.
Preventing Cancer and inhibiting tumor growth
Perhaps living longer
Preventing heart attacks and strokes
Improved concentration and thinking
Prevention of Alzheimer’s Disease and Parkinson’s Disease and possible reduction of symptoms
Lowered risk of dying from heart disease and cancer
George W. Bush Addresses the Nation on 9/11. His words are strong, what a great speech. #Neverforget911 #911Anniversary#Holocaust #Israel #Antisemitism #Chronic Illness #Crohns #standtogether
I am thankful yet quite worried. Thankful to be living in the United States of America. Thankful that I am still alive despite multiple surgeries and dangerous medications for my Crohn’s Disease. Thankful for those in public service that defend the freedom and right to live. Thankful that 18 years later our nation still honors our heroes and loved ones that are no longer with us. I am also thankful that our Nation supports other beacons of freedom around the world because against terrorism we must never give up. God Bless America. God bless our allies and those around the world who fight evil.
Yet, as I notice the rising Antisemitism around the world and in our great nation USA I know that as a nation we must stand behind Israel and stop Antisemitism here in our country as well. The Jewish people in America and in Israel and around the world would benefit from a United front from USA in support of our Jewish brothers and sisters. For if we are to be a beacon of hope and light for the world we must protect our citizens; all our citizens who are under attack by terrorists, including protecting the Jewish people.
This problem needs to addressed at the highest level and not speaking about the problem will not help. Staying silent does not help. Israel is a beacon of freedom, hope and light in the Middle East and we need to support Israel. I myself have been a target of Antisemitism going back to grade school when a racist bully wrote a Swastika on my desk and threatened me. I have spoken up and defended myself but the most hurtful part of the Antisemitism against me is that it has been done by those friends or others whom I considered to be friends. Spend enough time with someone and their bigotry will show up it seems. There have been many other incidents toward me as well.
The slogan Never Forget originally was used in reference to the Holocaust and it still is because we must Never Forget the Holocaust and the 6 million Jews that lost their lives in the worst possible ways during World War II by the Germans/Nazis and their allies. In fact the Holocaust solidifies the very need for the Nation of Israel to exist, to ensure the Survival of the Jewish People.
Regarding 9/11, I remember sitting in my English Class at High School when we first heard about the terrorist attacks. A moment in time that I will never forget. The unity and strength our nation USA has shown is unforgettable. We must stay strong as a country and remember that even in these horrible times of tragedy we remain the “beacon of freedom”.
This attack took place less than one year before I developed Crohn’s Disease, something else I will never forget. Life has never been the same since the terrorist attacks and since I began living daily with pain and suffering from chronic illness. A lesson from our great nation’s response to terror can be applied to personal pain and suffering from chronic illness like Crohn’s Disease. We must never give up, we must work together, we must be strong, we must continue to live our life the best way we can despite the terrible changes and events.
To be alive as a human being is to experience pain and suffering at times or at least to see other people have such experiences. One can simply turn on the news or read a newspaper and see that the state of the human condition is fragile. Throughout human history we face many challenges a species including health problems, natural disasters such as Hurricane Dorian, climate change, war, famine; also terrible problems of humanity causing suffering to one another such as in: war, discrimation, murder, genocide, hate, and many other problems.
Yet throughout human history there are numerous examples of people helping other people individually or as a unified group. The devastation caused to the Bahamas and now the US by Hurricane Dorian is hard to watch and also must be watched. I am pleased to see that there are people out there right now helping those in need. You can read this news article and click below t0 see how this cruise line is going to help evacuate survivors from Grand Bahama Island:
I challenge you as a person to do one act of kindness today and know it makes a difference. Saying “thank you” can go a long way and also letting someone know you “appreciate” them is great. First of all, be kind to yourself! Remember – You are a unique individual whom has never before existed in the universe and you do matter, I matter, we all matter (and are made of matter)! So, for example, today I am being kind to myself by taking care of myself and allowing time to rest and relax… and that first act kindness is that I made sure to ask people since the Hurricane, How was the Hurricane for you? How are you doing now?” – It is amazing how that one thoughtful comment allows another person to know that they are not alone and we are all part of humanity as a whole! We went through the Hurricane together – yet apart.
Climate change- in the long term and present moment (Hurricane Dorian) threatens my ability to access state of the art medical care – without which I am not sure how I would survive. This is a major issue for any person suffering with a chronic illness. For example, during a major Hurricane I may be unable to leave my home and access emergency care or medical treatment(s).
Having days to think about Hurricane Dorian and the potential life threatening impact of this major storm has reminded me about research I worked on earlier in my life while going to college for my Bachelor’s Degree. I worked on a research project to inquire if a deforested area of rainforest could be replanted and regrown in a tropical area and what kind of life would return. I witnessed the return of life to the Gaunacaste National Park in Costa Rica!
Today my mind turns to climate change and as it turns out my alma mater published a research article this month called:
The case for strategic and managed climate retreat:
I know this Hurricane may become a major burden on my health and that of others with a chronic illness. Climate change and the impact on chronic illness is the bigger issue at hand!
It is very easy for my condition to worsen and flare up if I were to lose power and the conveniences of A/C and fresh food along with the poor sleep, stress, and fear of needing to get to a hospital but being stuck at home!
I repeat, the threat to our modern world by climate change threatens my ability to access state of the art medical care – without which I am not sure how I would survive.
The article from Science Magazine about a strategy to mitigate against damage from climate change and major associated problems such as larger and larger Hurricanes. I am posting this article because 1) There is #HurricaneDorian heading straight toward USA and 2) My undergraduate university published this article and I had a very positive experience working on research at UDEL myself in a related field.
Stay safe during the Hurricane and best regards, Isaac Levinsky
Right now the news is talking about Hurricane Dorian, so please keep up to date. What is not mentioned on the news is how to prepare for your chronic health condition when you have a hurricane projected to land where you live. Each condition is different in terms of medications and other treatments so I will speak specifically to Crohn’s Disease and what are some good general ideas in a list below so I am prepared:
Make sure you have enough medication to treat your condition, especially considering you might be stuck at home and unable to access a pharmacy.
Considering Crohn’s Disease is a disease of the Digestive System, make sure you not only have survival foods, but foods that you can eat. Check with your doctor.
Crohn’s friendly foods: this is quite variable and your doctor might recommend a specific diet. An example is the Low Residue Diet – see link to learn more:
Stay ahead of dehydration, have electrolytes ready. Make sure to have plenty of clean drinking water available and you can add Gatorade powder for example to instantly have the electrolytes needed to recover when you have diarrhea from Crohn’s Disease.
Share your concerns with your family and ask for help if needed
Reduce your stress level and try to relax by reading or listening to music
Stay safe and listen to the news for Hurricane Preparedness and tips for safety.
Starbucks has made another mistake, this time it was a man with Crohn’s Disease who was denied access to the bathroom. Per state law, this man was supposed to be able to access the bathroom as he was having an emergency situation that led to an accident because he was denied bathroom access. To make matters worse for Starbucks, the man is also a lawyer, so we might hear more about this in the news. Here is the link to the article:
As it states in the article a total of 15 states have passed laws allowing people with certain medical conditions access to employee bathrooms. This is a move in the right direction. For those who do not know, Crohn’s Disease can cause accidents otherwise known as bowel incontinence. This is both embarrasing and also can be prevented sometimes, such as in the situation at Starbucks.
In fact one of the “superpowers” of having Crohn’s Disease is that I have to plan my whole life about where there are bathrooms so I can go #2 when needed. In fact, once you have Crohn’s, it becomes apparent that the world is not designed for people with Crohn’s Disease or Colitis. Imagine never being able to predict when you will need to use the bathroom and only having a minute or two to be able to use the bathroom before it is too late. This is a reality for me and for others out there. I hope that all states pass a similar law and it would be great to get a “bathroom pass” from your doctor if you had Crohn’s Disease.
In the meantime I will be working on a “bathroom pass” that you can print out if you have Crohn’s Disease that explains your need to use the bathroom -should the situation arise where you are denied access and about to have an accident. The bathroom pass will be wallet sized, printable, and helpful!
“Gratitude is best and most effective when it does not evaporate itself in empty phrases” – Foundation and Empire, Isaac Asimov
I am reading a wonderful series called Foundation by Isaac Asimov. He is writing about 50,000 years in the future yet the books were written starting in 1951. Isaac Asimov is a must read for any person interested in human interaction, science fiction, or science in general along with humanity.
A lesson that is quoted above is about gratitude and I know personally that being grateful is important to my positive outlook and daily survival and beyond survival actual living.
So try this exercise that I do: When I feel the most pain from Crohn’s or I feel the worst or just not my best in any sense I make myself focus on:
What I am thankful for?
Being thankful for me is a way of life.
It is “polite” to say thank you, but it is showing gratitude when you actually follow-up that up with help for some form of paying attention. For that is truly showing gratitude.
If there is someone in my life that I can help – I do! It is the small things that help in life, we have to learn to see the opportunities.
I am grateful to have life and to be able to look outside at nature and enjoy being a part of the natural world today! How do I give back today? I write this blog and encourage myself and those whom read it to try and be appreciative of the fact that we are alive – what a gift!
Today I feel sick this is nothing new. In fact each week I take a chemotherapy drug for my Crohn’s Disease. I also go to a cancer center and receive an infusion for my Crohn’s Disease and that medication is very powerful. The upside is that the medications weakens my immune system so that in theory my immune system attacks my own digestive system less. In my observation, I notice the side effects short-term. I get chills and fevers, severe nausea, loss of appetite, malaise and fatigue, and this ends up with my taking naps and then waking up more tired than when I went to sleep!
I chose the image above because I love the message and I tell myself this each day it seems. Do not give up, I am not alone, and I matter. Taken literally, I am made of matter, there are billions of plants and animals all around – life is everywhere, and defeat is not an option. The deeper meaning is that being positive helps to reduce the negative thinking that gets in the way of making the best out of each day. Also, social support is essential to reducing the isolation caused by illness and medication side effects like fatigue and fevers and chills etc. So instead of covering up in blankets and spending the day in bed if I have severe chills I will wear my winter coat inside with two pairs of pants and this is a normal thing for me to better cope with how I feel.
Right now I feel just awful – what might be described as chemo sick – but I tell myself that this means the medication is working and I know the alternative – no chemo medicine and that road only leads to more surgeries, pain, and worsening of my Crohn’s Disease. So when I do not have a choice in life such as needing to take these powerful immuno-modulators and infusion medication I try to embrace them and be thankful they exist – for I surely would be worse off without them 🙂 So to my readers, keep your head up, do what you need to feel your best today, and listen to your body – if you need to rest then rest, if you just feel sick – try to feel sick and read or watch TV – it beats just staring at the ceiling 🙂
“I coulda been a contender” Quote by Marlon Brando in: On The Waterfront w (1954). A great film in all respects. This film and line is relevant to anyone with dreams about what could have been in life! Whether it’s throwing a boxing match as in the film due to mob pressure; a sport’s injury, chronic illness – like me, or other circumstances that got in the way – you will relate!
A must watch film for sure! You will find this movie periodically on TCM – it was on yesterday. This movie shows that even beyond your “prime” you can still make decisions that will make positive changes in your world and help those around. We all have value even if you do not feel as well as you did before or if you are older, you are still a contender in my book!
By the way- the famous scene shown (picture and link to YouTube) were mostly improvised because Marlon Brando was a method actor – the feelings are real 🙂
As NASA prepares to land humans on the Moon by 2024 with the Artemis program, commercial companies are developing new technologies, working toward space ventures of their own, and looking to NASA for assistance.
“What a perspective it must be to look back at Earth from Space or the Moon and beyond! How small we each are in the grand scheme of the Universe and yet we can all make our impact each day! What you control the most is your thought process and trying to be positive. So right now I am telling myself that today will be an excellent day!” – Isaac Levinsky
Have you ever been in a crisis where you or a loved one had to stay overnight at a hospital, call an ambulance, or go to the ER (emergency room)? I have experienced all three situations personally as a person with Crohn’s Disease, a chronic illness. Be advised, even if you are brought by ambulance to the hospital – the care you receive depends on your health insurance. Sure the ER will save your life – but the system is bogged down by the complicated health insurance plans and what they cover. In my experience, it is more likely that you will sign that you will pay for services, give your credit card or health insurance card before you speak to a doctor!
So what can I do? Based on my experiences, some rules I follow:
Do not wait until you are in 10/10 pain to get help!
Waiting is part of life. But each second seems longer when you are really sick
Practice telling your “story” – why you are at the hospital- 15-20 seconds
Healthcare staff are people and their job is stressful so you must – repeat yourself with simple statements and requests, be consistent, be assertive, thank them for the help!
Get to know your healthcare plan so your care is not delayed- read on below
It is very difficult to understand healthcare insurance plans as they change greatly over time and yet – I have found some ways they stay the same – see below.
Health Insurance is a means to an end – you accessing health care. That is all it is.
Plan for the future – how much money can you afford for the year?
Max out of pocket – Look into what your plan $ dollar amount is? This is the how much money you have to spend when accessing healthcare or prescriptions before your plan pays for 100% of your healthcare costs
In Network/ Out of Network – Benefits are different based on this distinction. All things considered your healthcare cost is low in-network!
Plan for the worst case scenario – For example, how much will it cost me to go to the hospital if I am away on a trip and the hospital is not in my network?
These are my own opinions, please speak to a licensed insurance agent or your healthcare plan to find out the facts about your own health insurance. – Isaac Levinsky
Self efficacy is the belief in one’s own ability to complete a task. When faced with a big challenge this week – another Colonoscopy/Endoscopy with a 4 liter prep of TrilLyte to drink in 3 hours… – I got through it by stating “I can handle this!” and “I know I will be okay!” 🙂 And I was, I did not focus on how bad the prep drink tasted, but instead on the fact that I will get through it and there is a reason to do this – I want to feel better!
My name is Isaac Levinsky and I have a chronic illlness, Crohn’s Disease. I chose a picture of the universe to remind us all that we are part of something greater than ourselves! Please visit my blog/website to learn: Link to personal blog/website – please visit: https://atomic-temporary-163154162.wpcomstaging.com
You must live in the moment and be kind to yourself!
“Look up to the sky with wonder – I do! Asking the Universe “Why Me?” does not help so instead I focus on the fact that no matter how big my health problem is, the Universe is so much larger than I am! This gives a better perspective on life – to not allow myself to “be” my disease.
Writing about my health problems for the first time has been challenging and also inspiring. I believe that by sharing about my own strategies, difficulties, and life lessons I will help other people learn about Crohn’s Disease and how to live a positive life despite illness. It is easy to be misunderstood when I tell someone “I do not feel good”, so here is easy to understand information about what it means! Please read on.. to learn about the symptoms.
There is much to learn from watching tennis if you have a Chronic Illness.
Today is a momentous day in the world of Tennis! Two of the best male Tennis players of all time facing off once again on the grass tennis courts of Wimbledon. I will not spoil the result for those of you whom have not seen the score, but the match was absolutely fantastic. Both Nadal and Federer are absolutely inspiring to watch and they both deserve to win of course.
The same is true for Crohn’s Disease and myself, we both deserve to win, but alas, only one will achieve victory at the end of the match. Just like these tennis greats of today’s match, Crohn’s is a tough opponent, determined, unpredictable, powerful, and not willing to give up. So I remember this Chronic Illness has such power – so I am not overwhelmed with victory or defeat.
If you pay close attention to Roger Federer and Rafael Nadal, they are consummate professionals! They are gentlemen and they are good sports. They do not let a loss get them too down – there is always another match to play, and they do not just play for the win. When you watch the games and interviews, it is obvious that they ENJOY playing tennis, despite the stress or tension of such a high stakes match.
My point: live in the moment, try your best, enjoy the journey, some days you win your “match against Crohn’s Disease” and other days you lose, but remember – “You are a professional athelete of Chronic Illness and you can always win next time. Train harder, be kinder to yourself, and never give up!”
I am learning to listen to my body. Stress is something all human beings and other animals experience, it turns out it is a physical response also known as the stress response or fight or flight. Basically, our bodies go into survival mode and that leads to a worsening of pain and even your emotional state. When I find I am stressed and restless I actually go turn on music I enjoy, close my eyes and get into bed to rest. After listening to music for a bit I find myself feeling more positive and often I fall asleep. Studies have shown that self-selected music (music you enjoy) and classical music fight the stress response. It really does work! So I am working on bringing music back into my life! There is something about listening to an old fashioned album or CD that I find relaxing versus the radio (no commercials). I am not into the new tech of digital or online music because I find I enjoy listening to an album the way the musician wrote – to each their own!
2) Positive thinking fights stress:
In light of successfully making it out of the hospital once again I told myself “good job Isaac”. In fact I do tend to review my experiences and try to find a meaning and growth point from going through suffering. Being that I am still recovering and unsure what the future holds with Crohn’s my best response is to keep my review to a minimum and to try to live mostly in the present moment. So instead of reviewing all the what scenarios (what happened and what will happen) here in my blog post I will discuss how I am currently managing my stress with positive thinking.
I have found that it is helpful to not allow myself to invest much energy into the pity party. “Oh, why me”, “I can’t handle this”, or “this isn’t fair”, or my favorite go to “I wish I never had Crohn’s Disease”. These thoughts are natural but not helpful.
Instead I tell myself “glad that is over”, “good job”, “I will be okay”, and “now that is another type of pain I can handle” – this builds confidence in my ability to handle my chronic illness. This change in thoughts to being more positive is well researched and call “cognitive reframing”. Essentially, I think of our thought process as an investment. Am I going to invest my limited resources in negativity, pain, and anger; or will I choose to invest in positive affirmation and giving myself credit for making it through another hospital stay. I have tried both investments of course and still do and I imagine you can guess which one actually helps! Try and be positive and be kind to yourself and say “good job”, that is what I strive to do 🙂 – Isaac Levinsky
I enjoyed white water rafting before I had Crohn’s Disease at age 19. Part of the fun was not knowing how much water would be released that day and how big or rough the rapids would be. The best part was that the rapids lasted only 30 minutes, then it was a smooth and calm ride down the river. Life with a chronic illness and my Crohn’s Disease is very much like taking a raft ride down a fast moving and ever winding river with white water rapids.
Each day, each moment I never know truly what to expect. I might wake up and think that today will be a good day and then 5 minutes later end up the bathroom for an hour with severe pain, bleeding, and diarrhea. The problem with this and any chronic illness being unpredictable is that it is harder to cope with and manage.
Knowing that the white water river rapids lasted only 30 minutes gave me a finish line, and end in sight – I knew I could endure it and that it would be over soon. With Crohn’s Disease, I never know what is around the next bend. River rapids are rated on a 1 to 5 scale, with 4 and 5 being very rocky, fast, and dangerous. I never know in my daily life if I am about to go around the bend and suddenly there is a waterfall with huge rocks, or if the current will slow a bit and provide me some reprieve from the onslaught.
Interestingly the way to manage both river rapids and Crohn’s Disease moments of crisis is the stay in the moment, not focus on the past or future and be present. This concept is called Mindfulness and essentially it involves paying attention to only what is going on at the moment without judging or evaluation it. I simply notice and comment in my mind what is going on. A key factor is that I pay kind attention. There is empathy and kindness when I observe any pain and suffering and I take deep breaths and focus on my breathing, noting I am okay and I can handle this!
In the future I plan to write more about the uses and benefits and my personal journey with mindfulness and relaxation.
I made this website because I have Crohn’s Disease and I want to help others with Crohn’s Disease or Colitis. My Crohn’s Disease started when I was 19 years old and has persisted in a moderate to severe classification meaning I am sick every day. I chose this photo of the ocean and the coastline because in life with Crohn’s there is always waves crashing on your shore. Be it a new medication, are up, pain, fatigue, or worse.
There are also calm moments when hopefully you can have a break from the illness and just be YOU. Do not overdo when you feel good, balance activities with rest is what I have learned!
I also have my doctorate in Clinical Psychology with over 10 years in healthcare experience working with individuals with chronic illnesses. My goal is to write about my journey with Crohn’s Disease in a book based on my own illness experiences and also what I have learned both personally and professionally.
As you follow these blog posts you will see that this site is a work in progress. The plan is to have more content added to improve the site give readers an understanding they are not alone.
I am currently in a flare up of symptoms meaning that I am having increased pain, illness, fatigue, inflammation due to Crohns Disease.
My thoughts, you have not suffered or been in pain for no reason, your life has a purpose, you will overcome, and be nice to yourself because remember….having any disease is not your fault!
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