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GOT FRIENDS?

6/29/2015

4 Comments

 
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People are busy.  That busy-ness leads to compartmentalization of our lives. We have people we connect with exclusively at work, others at church, perhaps some solely because they happen to be our neighbors. 

It takes a lot of time and effort to cross connect boundaries to move these associations from affiliations to actual relationships.  For that reason, most people are content to simply maintain these connections while it is convenient.  I have found that once the context for the association is removed, so is the entire connection. 

We moved around a lot in the years I spent working.  While we were living in one place, it would seem that we had a lot of connections with coworkers, neighbors and people from church.  However, once we moved, most of those connections were lost – out of sight out of mind, I guess.  Besides, maintaining these connections may require work – like sending personal messages on Facebook or an occasional phone call.

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Now, ALS has caused me to lose connections.  Since I no longer work, those interactions are gone.  Since I can rarely make it to church these days, most of those connections are gone.  

I am not able to send emails or make phone calls without someone doing it for me so many relationships have been lost.  I am in my home a lot so fortunately, my neighbors are still connected to me!

Being in this situation has made me think about what people can do in order to stay connected especially with someone like me who has been forced to be removed from the environments that led to all their social interactions.  I am not going to lie; I am lonely.  

ALS is my only reliable constant companion.  Russell and Laura are around me the most but they focus much of their time and energy simply on taking care of me.  My children do spend time with me but they are also typical young adults who are busy with jobs, friends and school.  I long to have some meaningful connections outside of my family.

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There are a lot of good, well-meaning people out there who may be reading this and know someone like me who is lonely.  Perhaps you have an elderly neighbor who recently lost his spouse or a coworker who took an unplanned early retirement. 

I want to encourage you to take steps to maintain the connections you have in your life and turn them into relationships.

Even if it has been a while since you last communicated, find a way to reach out to the person.  With all of the electronic options available, it is so easy today.  Send an email, text or utilize  ancient means of communicating like a phone call or even a note in the mail.  I guarantee hearing from you will bring a smile to the person’s face.


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Now that the lines of communication are open, I suggest that you stop by for a visit.  In order to avoid awkwardness, and potentially overstay your welcome, it is a good idea to arrive for the visit prepared with an activity. 

For example, you could bring a photograph from an outing that made you think of the person you are visiting and talk about the reasons why you thought of them.  You might bring a passage from a book that you found interesting or inspiring.  You could even come prepared with some funny YouTube videos queued up on your phone so you can share a few laughs.  Everyone loves cat videos, don’t they?

If the visit goes well, ask at the end of that visit to schedule another time to get together.  Do it then.  If you wait, months may go by before you get up the courage or think you have time to set up another visit.  Pull out your planner and pencil in a date.  

If the person you are visiting is healthy, you might set something up once a quarter.  If the person you are reconnecting with is in failing health like me, you may want to set something up more often.

If the format of your first visit went well, why not stick with it?  If it didn’t go well, try one of the other suggestions.  If you have the luxury of traveling, ask if the person you are visiting would like to see your vacation photos.  I know I would love to live through someone else’s amazing experiences.  

If you have cute kids (and don’t we all?), why not share some videos of your children?  This is a win-win because you will enjoy sharing your photos or videos and the person you are visiting will enjoy getting to know you better.

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Be cautious of bringing children and too many people at once.  For people like me, having lots of people and especially children around, increases my risk of being exposed to illness which could be deadly.

Sometimes a simple massage or moving my arms is all I need because I cannot do it myself.

Good habits are all about discipline.  Discipline involves discomfort.  Force yourself to get uncomfortable as you reach out to someone who needs a relationship in their life.  I am reminded of the quote from Mother Teresa: 


“The smallest deed is better than the grandest thought.” In other words, do something. You will be glad you did! 

4 Comments

A Day in My Life

6/15/2015

3 Comments

 
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Last week’s post presented a day in my life from Laura’s perspective.  This post talks about a day from my perspective. 

 Let's begin our "day" at 9pm on Saturday when Laura puts me in bed.  I look forward to getting into bed because Laura will sit down and watch a movie with me.  I imagine this is what many married couples are doing on a Saturday night together so it helps me feel “normal” for a bit.  As we laugh together at the movie, even if it is a bad movie, I forget about what is going on in my life.  

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Once the movie ends, it is hard for me to fall asleep.  I have so many thoughts going through my mind.  I am afraid I will not be able to get Laura’s attention when I will need help during the night; and I know I will need help several times throughout the night. 

I think about what I would be doing with my life right now if I were healthy.  I get sad thinking about my children and the experiences they have missed and some they have had simply because I have ALS.  I want to experience holding my children again.

I need the morphine and Lorazepam to quell these thoughts and because I have a lot of pain in my legs and bottom from not moving much.  I don’t look forward to putting on the AVAPS mask.  I feel like it restrains me, but I know it is important for my breathing so I wear it. 

I need a lot of adjustments to get comfortable.  You probably go through many adjustments yourself as you are trying to get to sleep.  I have to ask someone to make every adjustment for me from covering or uncovering me to moving and scratching me.  I usually go through a couple of cycles of needing my blanket, my pillow, and my AVAPs mask adjusted. 

My skin crawls at night which makes me feel itchy and, of course, I cannot scratch.  I have to prioritize my needs so I do not annoy the person caring for me with endless demands. I have found that if I focus on positive things about my life, it helps distract me from my needs.  Laura says it is similar to using Lamaze breathing during childbirth – it takes your mind off the pain but it is still there.  The only difference is I am “giving birth” every night.

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I finally doze off around 12:45am. I am awakened at 2:00am because I need my position and mask to be adjusted. I get Laura’s attention and she asks me what I need.  Why can’t she just figure it out? 

The problem is I had to use a lot of energy to get her attention.  I don’t have enough left to tell her what I need.  She patiently looks at me waiting for me to talk.  Remember, I have a mask on and the AVAPs machine forces air into my mouth every time I open it.  It is trying to equalize the pressure in my mask so talking becomes very difficult. 

In the beginning, I was frustrated with this exercise.  Now I gather my energy and yell out what I need.  If I am still not understood, Laura will disconnect the air hose so I can speak without fighting against the air pressure.  This is another reason why I hate the AVAPs! 

After the adjustments, I lay awake for about half an hour.  I know this, because I stare at the large digital clock that Russell configured for me angled just so I can see it.  It gives me peace of mind to know what time it is.  I am not sure why because time just passes, but I like knowing what time it is. 

If I lay here too long, my mind fills with thoughts.  I think about dying and worse, I think about living for years like this.  It is in these wee hours when my faith is challenged.  The only thing I can do to quiet my mind is to meditate on scripture.  I am reassured by God’s promises as I try to rest in His peace and comfort.  

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I sleep well until 6:00am when I need to be moved again.  I am still tired.  I sleep soundly until Laura gives me a formula in my feeding tube.  She tries to let me sleep through the feeding but I feel it flowing into my belly.  It is such a weird sensation.  I ask Laura to roll me on my side so I can continue sleeping; meanwhile, I am hoping I was not too much of a bother during the night. 


I am deprived of a basic enjoyment of life - eating.  By that, I mean, tasting and savoring food.  What I am about to say will make you go out and buy chicken. 


I miss getting a bucket of KFC; I love the smell of that greasy chicken and how warm the bucket feels in my hands.  I would carefully select the perfect piece, the one with extra breading.  I would pick it up with my hands and bring it to my own mouth and with a “crunch” I would taste all the juicy, warm goodness of that chicken.  

Thankfully, I am never hungry or thirsty so generally I am unaware of this deprivation until the food commercials come on TV and remind me of what I am missing.  When I am given a formula, I feel like I am being violated.  I know I need the calories but what is the point of all this?  

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It is 10:15.  Laura used to give me a shower but because I cannot help with the transfer, it is safer to stay in bed and have a sponge bath.  I have to admit this is not bad having a hot blonde taking care of me! 

 Unfortunately, my sponge bath is interrupted by all the mucus in my throat.  I start panicking because I cannot breathe.  Laura has to use the suction machine to vacuum the mucus out of my throat.  It feels awful because I am gagging and she has a tube in my mouth.  My body is in distress so I need to distract myself with happy thoughts.  I know this breathlessness is temporary but it is scary!  


Laura finishes the sponge bath and I need to use the toilet.  This is something that in our life before ALS was a very private time.  It was a time for me to catch up on my emails and voicemails.  I know you didn’t want to hear that but I am just keeping it real! 


Now, I feel humiliated that my wife has to deal with putting me on the toilet and checking on me to make sure I am alright – there is a danger I could fall off.  By the way, I am not alright from an emotional standpoint but I don’t say that to Laura.  I watch her struggle to move me around and I am thankful I am not a big person.  

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At 10:50am, we continue with the morning routine. Laura dresses me, shaves me with an electric razor and makes sure I am presentable.  I am ready for my percussive vest and cough assist.  This is another part of the routine that I don’t enjoy.  The vest pulses to shake my chest and loosen the mucus in my lungs so the cough assist can help me cough it up. 

I can imagine this must be similar to what water-boarding feels like.  I am not able to breathe when the machine forces air into my lungs and then sucks it out.  It is so violent that my eyes tear up.  After a few cycles, I am exhausted.  I don’t want to do this anymore. 

At 11:30, we have completed that draining regimen.  It is time for more force-feeding.  I know I should be happy about getting all this care but it is really making me feel sad.  I should be taking care of my family and not the other way around. 

I realize that I have to be nourished otherwise I would be too weak to get out of bed.  Laura reminds me that I am not doing this for myself; my actions are setting an example for my children of not giving up just because life is hard or not what you expected.  

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My morning routine is over by noon.  It is time for Laura to take care of herself.  I feel bad for her because we have a fabulous master suite from which she has been evicted by this disease and forced to the basement.  I wish things were different but we are where we are.  

The afternoon moves along at a more leisurely pace.  I am thankful I have a computer that can understand my commands.  Using my eyes, I can move the cursor on the screen then, using my legs, I can push my hands resting on my lap together to press a button that acts like a mouse click.  I enjoy playing chess with people all around the world.  While I am playing, I have another opportunity to escape.  

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It is Sunday so we are going to church.  I used to enjoy getting in the car and just taking off but not anymore.  I feel like a baby.  Laura needs to make sure my “diaper bag” is properly outfitted with everything I may need during an excursion.  


Riding in the van is uncomfortable.  Try as she may, Laura cannot avoid all the potholes or speed bumps.  Every time she hits the slightest bump, since I have no muscular control, it jostles me.  Imagine a bag filled with water bouncing and flowing with the vehicle’s every move; that is me.  I would like to avoid going out but I do it because my family needs to have as normal of a life as possible.  

We enjoy the church service.  The people at church are an enigma.  Every Sunday, I am met with much love and concern; however, these sentiments must be reserved for Sundays only because I typically don’t hear from anyone between church services.  I think, in general, people feel uncomfortable around me.  

There are those who seem concerned but never visit and then there are people who come over and talk to my family about me while I am sitting right there!  I have found myself saying, “I am right here!  I can hear you!”  I don’t think they are bad people, they just don’t know how to handle my situation.  Maybe that is an advice column for another blog post!

My day is over.  I am very fortunate that I have my family.  I see them laughing in the kitchen.  Jordan is acting silly, trying to lick Laura’s face. Laura, acting totally out of character, surprises Jordan, and licks her first!  We all laugh.  Even the dog gets involved by barking.  It is pandemonium and I love it!  It is my life and I am thankful to have another day in it!

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.  
Philippians 4:8

3 Comments

A Day in Akhil’s Life

6/8/2015

5 Comments

 
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Note, I recognize this is longer than Akhil’s normal blogs.  There is a lot that goes into creating another day in Akhil’s life so lots of words were needed!

 A day in Akhil's life isn't simply a day in his life. His every action must be completed by someone else so a day in his life becomes a day in someone else’s life. 

When he wanted to write a blog about his day, I thought it was a good idea to share with the world what the guts of living daily with ALS looks like both from Akhil’s perspective and mine (Laura, his wife).  Akhil will share his perspective next week.

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Let's begin our "day" at night, right around midnight.  Akhil has been in bed preparing for sleep for about an hour at this point. He has had morphine for any pain and “air hunger”.  Because of the weakening in his diaphragm muscles from the ALS, Akhil is not able to breathe deeply enough to satisfy his body’s need for air.  When that happens, it can induce anxiety and breathlessness and feelings of ‘air hunger”. 

He also has had Lorazepam which helps with the anxiety brought on by the air hunger as well as from thoughts that I won’t hear him needing something at night and he will be left to suffer, his cries unheard.  He has also had Amitriptyline which helps reduce saliva production. Taking this medication helps prevent Akhil from choking on his saliva in his sleep which can induce an anxiety attack.  All of these things help his caregiver (either me or Russell) sleep better too! 

Back to our day at midnight, Akhil is still requiring adjustments to get comfortable so he can sleep: he decides he is cold and needs to be covered, his body needs to be shifted, his nose needs to be scratched and the mask to his AVAPS machine that expands his lungs further than he can on his own, is leaking air so it needs to be adjusted.  

After about forty-five minutes of getting comfortable, Akhil is ready to sleep.  I take a dose of Benadryl so that when I am awakened during the night to take care of Akhil’s needs, I can quickly fall back to sleep.  If I skip this, I tend to lie awake for a couple of hours tossing and turning trying to fall back asleep before my next awakening.  

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We both finally doze off around 12:45am. I am awakened at 2:00am by Akhil’s shouts muffled by the mask and noise of his AVAPs.  The mask is leaking again.  After attempting to adjust it, but not being able to stop the air from leaking around the mask and blowing into his eyes, he insists I remove the mask altogether. 

I hate to do this because the AVAPs helps deliver more oxygen to his body then Akhil can get without it. I reluctantly agree.  I adjust Akhil’s position in the bed to prevent pressure sores from forming. We both get back to sleep by 2:30am.

 At 6:00am, I am awakened again by Akhil.  He needs to be moved.  I shift his position quickly and slip back into bed.  Now sleep comes more slowly for me because it is getting close to the time that I awaken the rest of the week when I am not taking care of Akhil.  I know I need more sleep or I will be dragging so I force myself to lie there until I doze off.  I wake up on my own at 8:40am feeling well-rested.  

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I start the morning by giving Akhil a formula in his feeding tube – his first 375 calorie installment.  I adjust his position and ask if he wants to get up or sleep.  He chooses sleep. I go to the kitchen where I prepare the day’s three doses of a variety of supplements mixed with coconut oil and water. 

I grab some workout clothes then head to the basement to exercise.  It may seem selfish that I take time to work out each day but it is a time to clear my mind and build up my strength so I can continue in my part-time role as caregiver for Akhil. 

I am cognizant of the time as I am exercising.  I run upstairs every ten minutes to check on Akhil.  Although I am working out in the room directly beneath him and could hear him if he called out, I think it makes him sleep better knowing that I will be checking in frequently.  At 9:40, I head upstairs to give Akhil his first dose of supplements through his feeding tube.  Then I finish up my workout and am back upstairs shortly after 10am.  

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I ask Akhil if he ready to get up at 10:15.  He agrees that he is ready to start the day.  I give him a sponge bath in his hospital bed. I used to give him a shower but lifting him has gotten more difficult for me as he is able to assist less and less so we skip transferring him to the shower chair and settle on a bath in bed. 

He interrupts the bath to request suction as he has more mucus than he can swallow in the back of his throat.  After helping him with that, I continue his bath. I carefully clean around his feeding tube in his belly.  I change his condom catheter, a device that catches his urine.  I think about how freeing it was when we first began to use the condom catheter.  We would use it for outings because it allowed us to leave the house and not have to worry that there would not be a bathroom that I could help Akhil use.  Now it is not an option but a necessity.  I check his body for signs of skin breakdown or pressure sores.  I put shorts, socks and shoes on Akhil.

I lift him from his bed into his power wheelchair at 10:30am.  Akhil indicates that he wants to use the toilet. I maneuver his 24” wide chair carefully through the 25 ½” opening to the commode room.  There are plenty of scars on the door and trim indicating where failed attempts have been made.  This time, I am successful!  I get his chair as close to the toilet as possible in the 3’ x 5’ space that is the commode room.  

It is a tight fit with me, Akhil and the chair trying to occupy the same space.  I lift the 130 pounds of limp weight that is Akhil and try to pivot his feet to help me position him on the toilet.   Some days the landing is gentler than others; today goes fairly smoothly.  I back the wheelchair out of the space into the main bath area.  I get Akhil a neck brace to hold his head in place so it doesn’t flop back or forward sending him into a panic when he either cannot breathe or swallow.  He lets me know that he needs more suction to clear his throat.  

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At 10:50am, I lift Akhil off the commode back into his wheelchair.  We continue with his morning routine.  I put his shirt on him so we can tackle the next item on our agenda: clearing his lungs. I take him back to the bedroom which is beginning to resemble a hospital room with the bed and all the paraphernalia used to keep Akhil functioning. 

I put a vest on Akhil that attaches to a machine that violently vibrates his chest for twenty minutes to loosen the mucus that has built up overnight.    Meanwhile, I throw in a load of laundry, make the beds and tidy up.  I stay within earshot because Akhil can suddenly need suction during this process.  Today the machine runs its course uneventfully. 

After unfastening the vest, I get two more machines ready to go:  the cough assist and the suction machine.  The cough assist does just what it sounds like.  It helps Akhil cough because he no longer has the muscles to do that on his own.  It forces air in his lungs to expand them then it pulls air back out.  We go through a couple of cycles of this before the cough is productive bringing up mucus which I quickly suction away.  We repeat this process until Akhil is either worn out or feels that his chest is clear, whichever comes first.

At 11:30, we have completed that exhausting regimen.  I give Akhil a second formula through his feeding tube.  I shave him, trim all the unruly hair that you men know about, trim his nails and brush his teeth.  He is looking handsome and ready to tackle his plans for the day.  I am finally able to get in the shower.  It is 11:50am.

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I go to the basement where I have been living for the past two years since this disease took over my space in the master bedroom.  I sleep on a sofa bed when Russell is here, living in a space that was intended for short-term guests, not a permanent resident. 

I have moved my toiletries downstairs so I can shower and get ready but I have not moved my clothes.  I think part of me is hoping that there will come a day when life returns to “normal” and I once again occupy the queen’s place in the house!

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At 12:30pm I give Akhil his second dose of supplements in his feeding tube.  This is a source of additional calories thanks to the coconut oil and also counts toward Akhil’s liquid intake.  It is my (or Russell’s) responsibility to make sure Akhil gets his four formulas per day plus four cups of water or liquid.  If we fail, there are consequences like issues with using the bathroom and dehydration.

The afternoon moves along at a more leisurely pace.  Akhil has time to play chess on his eye-gaze-equipped computer or watch TV.  I have an opportunity to do more laundry and get caught up on household tasks.  The time from 12:45 until 4pm is basically “free time”. 

I just have to give Akhil a formula at 1:30 and another at about 3:45.  Other than that, I stay close in case he needs something.  He typically needs his elbows moved and feet adjusted fairly frequently and occasionally some suction.  Other than that, the afternoon is mine!  Today I choose to spend that free time writing this essay and catching up on laundry.


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Just before 4:00, I move the van into the street so I can load Akhil into it so we can attend our church’s evening service.  Our driveway is slanted and Akhil feels it is dangerous to ride up the ramp into the van on a slope.  (I have the computer set up so Akhil can see what I am typing on the big screen TV so he informed me he does not “feel” it is dangerous, it IS!) 

I humor him and move the van to the flat street.  I maneuver the wheelchair into the van using the ramp that comes out the trunk.  I fasten the hooks to the front and back of the wheelchair to keep it secure.  I put a seatbelt on Akhil to keep him secure and adjust his chair so he is comfortable.  

As I drive us to church, I have to be careful to avoid potholes and go slowly so Akhil doesn’t get too jostled.  He doesn’t particularly enjoy going places these days because of how uncomfortable the car ride can be.  Once we get to church, I unhook his chair, unfasten his seatbelt and Jordan drives him out of the van and into church for reasons I won’t go into but think back to the bathroom door scars.  

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We enjoy the church service and get home at 6:30pm.  I give Akhil his last supplements in his feeding tube and figure out if he has had enough water today compensating for any shortage.  I get dinner ready for me and Jordan.  It is usually something quick and simple because I am exhausted from having most of my time spoken for. 

I lament my expectation that weekends are supposed to be for fun and relaxation, something that evades me.  We wrap up dinner and dishes by 7:30pm.  I sit down for an hour or so to talk to Akhil or watch a show with him.  Russell comes to take over at 9:00pm.  He and Akhil head to what used to be my bedroom where they shut the door and begin their routine.

I descend to my bedroom where I spend some time planning the week ahead and reflecting on the blessings of this past week. Rather than focusing on all the work and exhaustion, I focus on how thankful I am to still have Akhil in my life.  I close my eyes and enter a peaceful rest. 

Let us fix our eyes upon Jesus.

5 Comments

The Key to Happiness

6/1/2015

3 Comments

 
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Imagine that you are in the prime of your life (maybe you are!).  Take that image further, and think that your job is going great, your children are amazing and you have a wonderful relationship with your spouse (hopefully all this is true!).  

But, then your world is rocked by a job loss, an unfaithful spouse or a child making some bad choices.  How do you find happiness here?  

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Being an engineer, I was excited to find out that the key to happiness lies in a mathematical equation!   I can manipulate that!  The equation is Happiness=Reality÷Entitlement. 

There are three variables in this equation:  Happiness, Reality and Entitlement.  You have the power to manipulate only one of these variables:  Entitlement.  Happiness is a result of your reality compared to the level of entitlement you feel. 

Reality, well, it is what it is.  Let’s assign reality a value of, say, 10 (for easy math).  Let’s say your entitlement level is pretty high, a 10, then your happiness level is going to be a 1.  Now, let’s say your Entitlement level is pretty low, a 2, then your happiness level is going to be a 5!  Basically, the lower your expectation of being entitled to things, the happier you will be!

Before going further, I should clarify that in some extreme cases, time is an added variable.  For example, in the case of a death of a loved one, you may not be able to find happiness until a significant amount of time passes.  However, this post will help you even in extreme circumstances.  This equation is not a silver bullet but it is another way of thinking about your life. I know when I find myself throwing a pity party I think about math, the variables and my part of the result.   

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You may feel that you are entitled to a CEO-level position paying $250,000 or more per year but you are offered a managerial spot paying under six-figures.  Your happiness is not going to be very high!  You can turn that around by changing your thoughts of entitlement.  

You may believe that you are entitled to good health because you eat right and exercise and yet you face a life-threatening diagnosis.  How do you stay happy?  

You must realize that just because you do all the right things, you are not entitled to anything.  Once you are able to change and control your attitude of entitlement, you can control your level of happiness.

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You can dramatically reverse your low level of happiness by taking on an attitude that is the inverse of entitlement:   gratitude.    If you look at your life and view it through a lens of gratitude you will realize you are blessed rather than short-changed. 

I am happy because I am not focusing on the life I feel I am entitled to.  I am accepting what God is choosing to give me and because of that, I stay happy.  If you are in an unhappy frame of mind, you may need to re-evaluate what you feel entitled to and recognize the blessings in your journey. 

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These principles are not my idea.  They are taught by Jesus in the book of Luke 14: 7-9.

When he noticed how the guests picked the places of honor at the table, he told them this parable:  “When someone invites you to a wedding feast, do not take the place of honor, for a person more distinguished than you may have been invited.  If so, the host who invited both of you will come and say to you, ‘Give this person your seat.’ Then, humiliated, you will have to take the least important place.

Rather than feeling that you are entitled to the place of honor at the party, just be grateful that you were invited.  Looking for blessings in whatever situation you find yourself in will increase your gratitude and lower your level of entitlement.  That is the key to happiness!    

3 Comments



    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
    ​
    God continues to show his love for us through his people.  Thank you to everyone who has reached out to us, prayed for us, visited Akhil, brought us a meal and served us however God led you to serve.  Continue to follow those urgings from God in serving those who are struggling.

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    Akhil and Laura Jhaveri

    Applying the skills they've learned in over 20 years of marriage, this couple faces the challenges of ALS together. MND or motor neuron disease is deadly with no known cure.  The Jhaveri family has to endure this battle and show the world God's love!

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