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Thursday, February 20, 2014

The Grieving Process for a Chronic Illness and How to Overcome It

I woke up today to find that the Gastroparesis community on Facebook has lost another GP warrior. It makes me incredibly heartbroken that modern science has no cure for this yet. How many more people have to die before awareness can be spread?

On that note, I decided to write about the grieving process and how to overcome it with a chronic illness. Being told you have a chronic illness can be devastating and shocking, especially when you're told that your stomach will not work as it used to. Everyone goes through the grieving process - grieving for their life they'll never have again because chronic illness changes you. So, let's go through the grieving process together. That way, we can understand how to get through the process.

According to Judy Axelrod from Psych Central (LINK:

The stages of mourning and grief are universal and are experienced by people from all walks of life. Mourning occurs in response to an individual’s own terminal illness or to the death of a valued being, human or animal. There are five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying.”

In our bereavement, we spend different lengths of time working through each step and express each stage more or less intensely. The five stages do not necessarily occur in order. We often move between stages before achieving a more peaceful acceptance of death. Many of us are not afforded the luxury of time required to achieve this final stage of grief.

The death of your loved one might inspire you to evaluate your own feelings of mortality. Throughout each stage, a common thread of hope emerges: As long as there is life, there is hope. As long as there is hope, there is life.

Many people do not experience the stages in the order listed below, which is okay. The key to understanding the stages is not to feel like you must go through every one of them, in precise order. Instead, it’s more helpful to look at them as guides in the grieving process — it helps you understand and put into context where you are.

1. Denial and Isolation

The first reaction to learning of terminal illness or death of a cherished loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.

2. Anger

As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.

Remember, grieving is a personal process that has no time limit, nor one “right” way to do it.

The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.

Do not hesitate to ask your doctor to give you extra time or to explain just once more the details of your loved one’s illness. Arrange a special appointment or ask that he telephone you at the end of his day. Ask for clear answers to your questions regarding medical diagnosis and treatment. Understand the options available to you. Take your time.

3. Bargaining

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–

If only we had sought medical attention sooner…
If only we got a second opinion from another doctor…
If only we had tried to be a better person toward them…

Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.

4. Depression

Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words. The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.

5. Acceptance

Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.

Loved ones that are terminally ill or aging appear to go through a final period of withdrawal. This is by no means a suggestion that they are aware of their own impending death or such, only that physical decline may be sufficient to produce a similar response. Their behavior implies that it is natural to reach a stage at which social interaction is limited. The dignity and grace shown by our dying loved ones may well be their last gift to us.

Coping with loss is a ultimately a deeply personal and singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing.

The tricky part is, how do you overcome the grieving process with a chronic illness?

Therese J. Borchard, from Psych Central (LINK: has these tips for you to help you overcome the grieving process. There are five rules of living with a chronic illness:

1. Be confident you have the right doctor.

When you have CI your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don’t have that kind of relationship get a second opinion. Shop around. In my CI career I fired three highly recommended specialists because they were jerks. Thankfully I’ve also had wonderful physicians who literally saved my life and my mind.

2. Define your circle of support carefully.

Isolation leads to depression and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific support while others you thought you could count on cave. If someone inside the circle asks, “How are you?” Tell them the truth. When someone outside the circle asks, lie, say, “I’m fine” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them. A patient of mine found her mother would get hysterical at any medical news so it was better to keep her at arms length.

If someone asks if they can help say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. My patient’s mother could do laundry for her and that made both of them happy. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good.

3. Protect your health as you would a small child.

You are more than your illness. That part of you that functions well needs you to advocate for it. Of course there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that I suggest learning a new set of signals that are your clues for when you’re wearing your health thin. For me it’s lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it’s time for me to stop, assess and make changes. When I ignored those signals I relapsed and looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say ‘No’!

4. Create a new measuring stick.

Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can’t manage it.

Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.

5. Have dreams and strive for them!

You had ambitions to get a degree or promotion, to see the world or save it, to get married and have kids. Now you’re thinking, do I have to give that up? No, you don’t. It’s imperative for your spirit that you have goals for living, big and small.

What might change with the reality of chronic illness is the path and timing. I wanted to have kids and was told for years, ‘No.’ I had to adjust to the idea of life without kids or adopting. Then in my late thirties, my doctor said, go for it. After a scary, thrilling journey, today I have two thriving teenagers.

As we reach for the stars let’s appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.

To overcome grieving for a chronic illness, you must adjust to life with a chronic illness. Mary J. Yerkes, from Focus on the Family (LINK: tells us how to adjust with life with a chronic illness so that we may be able to move on.

She writes,

Adjust to life with chronic illness?

It might seem counterintuitive, but according to experts, you can live a full and meaningful life despite having compromised health. Millions of people living with serious chronic conditions have used their struggles as a springboard for spiritual, relational and emotional growth. Many have gone on to launch new ministries, careers, and friendships.

"Eventually, you adjust to a new normal," explains Lisa Copen, founder of Rest Ministries, Inc™*, an organization that serves the chronically ill.

According to Copen, once you find the right doctor, medication and support, you can learn to cope successfully with your limitations—as long as you remember that you're not just dealing with your physical well-being; instead, you're learning to cast your relationships, emotional and spiritual health and physical health in a different light.
Adjusting Relationally

Couples should devote as much time to managing their relationship as they do to managing the illness, advises Deborah B. Dunn, Licensed Marriage and Family Therapist.

"Find a third-party, outside of the family, who is supportive, encouraging and able to help you process the changes," she says. "Don't let your illness define you or your marriage."

She also advises against telling children that "everything will turn out fine."

It may not.

"Don't make promises you can't keep," she says. "I've talked to so many children during the years who have gotten so angry with God because they think He fell down on the job. Be honest without being graphic."

Family relationships are not the only ones to suffer. Friends, co-workers, neighbors—even people from church, may not know how to respond to the "new" you. Some may reject you because they're uncomfortable with your physical or emotional pain.

Copen also advises relying on a confidant who understands what you're going through.

"If you're having trouble finding support at the local level, use the Internet to find the help and support you need. In addition to Rest Ministries*, organizations like Joni and Friends* and Dave Dravecky's Endurance* offer tools and practical resources to guide you."
Adjusting Emotionally

For many, healthy grieving, which includes periods of shock and numbness, denial, anger, disorientation, and intense emotional pain, is the greatest challenge. Experts say it is essential that you engage your grief reaction. If you do not, they warn, it will surface in other, more destructive ways.

Here's another important point experts want sufferers to remember: While, the "grieving timetable" is different for everyone, changes in your condition may provoke additional losses and seasons of mourning. That's why it is important to practice patience with yourself, eat well, get sufficient rest, express your feelings—journal, cry, sing, and talk to others about your pain.

Scott Twentyman, M.D., a practicing psychoanalyst in the Washington, D.C. area, urges the chronically ill to watch for signs of depression and to seek professional help when needed.

"Trouble sleeping, loss of appetite, weight gain or loss, loss of interest in activities that were previously enjoyable, lack of energy and certainly suicidal thoughts… all are indications of clinical depression."

And if you are depressed, don't rely on medication alone.

"Treatment for depression is more effective when medication is used in conjunction with therapy," says Dr. Twentyman.

Here are some additional tips that will help you adjust to life with chronic illness:

Educate yourself about your condition.
Recognize your limits and learn to say no.
Accept help from others.
Build fun into your life.
Focus your physical and emotional resources on those things that matter most.
Share your gifts and talents with others.

Facing the Future

One of the biggest fears those living with chronic illness face is about the future. While no one can predict it, the experiences others have faced can help it if we have to deal with chronic pain or illness.

Trish Robichaud lives with relapsing remitting multiple sclerosis and depression.

"My health challenges…have taken my life in a direction that I would never have gone with the illness."

After her diagnosis, Trish built a home-based business that gives her flexibility and allows her to manage her condition.

"It's been a blessing," says Trish, "and I thank God daily for where I'm at in life today."

Then there's Linda Aufrance. She suffers from Lupus, but she believes her health issues has taught them compassion and sensitivity for those who are hurting; it has had positive affects on her marriage.

"As hard as it has been, my illness has brought me and my husband closer," she says.

Trish and Linda still struggle with physical pain. Still, they live rich and meaningful lives. And so can you.

It can be difficult to see God's hand in our pain. But we can be confident that, in Christ, there is always hope for your future.

When you accept your chronic illness and realize your limitations, it's almost like a weight lifts off of your shoulders. You can then find ways to cope. With myself, I've joined support groups, started this blog, started groups and pages on FB to get my illness out there, and I've done fundraising for it. All of this has helped me cope with having a chronic illness. I've come to terms with the fact that I may never go out to eat with my friends any time soon, but I'm happy to know that my friends and family love me and care for me no matter what. Unconditional love is almost as good as a cure!

Image Source: Taken from Imgur

Image Source: Taken from a friend who made it

There is an article on The Mighty that was shared by a friend of mine, which is related to this article and mourning the person you were because of a chronic illness diagnosis. According to the article,

"When You Can't Stop Mourning the Person You Were Before Chronic Illness
Written by, Jamie Jasinski

Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my blood work came back extremely abnormal in the autoimmune area. I can remember the exact emotions I felt in that moment on the phone and how scared I was, and I can remember the fear I felt the day upon receiving my diagnoses. While I knew that rheumatoid arthritis and Sjögren’s were bad, I didn’t know that they would be life-altering.

Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning of my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore.

Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared.

With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say 'no' to many outings, but those who honestly are sympathetic to your situation will stick around.

While I was told I’d have this forever, I did think that with medicine, I’d be back to my normal self eventually. Maybe I was naive to think that. I, instead, seemed to have more symptoms as time went on. Just yesterday, I found myself saying out loud that I felt like I needed to be in the hospital hooked up to an IV because I couldn’t handle the pain anymore. This statement was coming from someone who is absolutely petrified of hospitals. The pain ranges from my fingers to my elbows, to my neck, hips, knees and ankles, and I turn into a child not knowing how to help myself.

I try so often to think of how I can explain the type of fatigue I experience because it’s probably one of the hardest components of this. I try to explain to my husband that I’ll be going through my day and all of sudden, fatigue hits me. It feels as though if I don’t lie down at the moment that I’m going to collapse. It feels like the time in your life where you have felt most drained and energy deprived, but it happens multiple times a day and lasts two to three hours each time. No matter how much I rest, I still feel like I haven’t slept in days.

Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping.

I’ve just been told that my body will never be the same again, so I wanted to say goodbye to you as I await the arrival of this new body. You gave me the privilege of being left-handed and being artsy since I was so young; you gave me the rhythm and moves that helped me find a love of dance that lasted me 10 years. You gave me the courage to go on stage and dance while my family and friends sat there to watch and support me. You sent those smiles to my face that others would often tell me made their day; you made me a genuinely happy person that would never allow the bad things in life to take over. You gave me the ability to take up running at the age of 26, and you showed me that if you really put your mind to it, you can achieve things you didn’t think you could do. You stayed with me while I began a weight loss journey and achieved what I set out to do. You gave me countless miles of walking around and exploring life like one should while growing up. I don’t think I gave you enough credit at the time, but you managed to keep going on the days where you barely had the energy to do so. You got through going to college full-time, while also working 30 hours a week and trying to make time for my family life and also a social life. You won’t be taken for granted and will be remembered and appreciated for the rest of my life. I will miss your energy. I will long for the days of being pain-free and being able to walk around with no issues. I will miss our shopping trips, as they will be few and far between soon. I will miss vacations where I didn’t have to worry about planning around taking breaks and rests throughout the day. I will miss a body free of medication in order to function. Most of all, I will miss the feeling of being me the most. My new body will be different and not the one I have known since I was born. I will still be me inside, but I’ll never really feel the same again. Thank you for the time I was able to have you."

NOTE: If you are interested, I have a Facebook Page. I'm trying to reach 500 Likes. If you want motivation, inspiration, and just straight up positivity, here's the link:

Monday, February 17, 2014

How to Pass Time in a Hospital

So, I have been thinking about this a lot lately, how do people spend their time during long hospital stays? I was hospitalized last year for eight days straight and I thought I was going to go crazy. I probably would have without my laptop!

Therefore, I am going to help you come up with ideas to pass time in a hospital. If you have more suggestions than I was able to think of, please comment and post them so that I can update this list. I want to make sure our members have suggestions. Also, if you can think of things to do in a pediatric hospital, let me know. But, for now, this is the list for the adults who are hospitalized.

According to Carepages, LINK HERE:

"Staying busy can be strong medicine for someone facing a long or extended hospital stay. Here are some ideas to keep boredom at bay. Use them for yourself or suggest them to someone in need. These tips also work well for someone recovering at home.

Take an online class. Have you ever wanted to learn how to scrapbook or speak fluent Italian? Now’s your chance. The Internet has plenty of online resources. Here are a couple to get you started:

Learn to play an instrument. The therapeutic effects of music have long been established. Depending on your mobility and situation, strumming a guitar or even simply picking up a harmonica can both soothe and distract [side note: this may not be the best thing to do at a hospital around a lot of sick people trying to rest]

Play board games or cards. A heated game of good old-fashioned Monopoly or Scrabble can take everyone’s mind off things for a few hours. And a deck of cards can be enjoyed together or solo (hellooooo, Solitaire).

Start a website journal. (that’s us) makes it easy to create a free website to share your journey, post photos and stay in touch with everyone. Create a website in minutes. [I use]

Write letters. There’s nothing quite like getting a hand-written letter in the mail. While email and texting are instant, the flavor and fragrance of a real letter can be priceless (not to mention the anticipation of letter opening). Now that you’ve got some time, why not put pen to paper? Don’t forget to say “write back.”

Load up on brain food. Sudoku and crossword puzzles can be found everywhere these days. And studies show brain exercisers can sharpen mental acuity and even ward off age-related illnesses such as Alzheimer’s.

Watch movies. If hospital cable doesn’t tantalize you, create your own entertainment by downloading and watching movies on a laptop or iPod. Portable DVD players do the trick, as well.

Decorate your hospital room. Many hospitals have “Art-Cart” programs that provide a rotating art collection from which patients can choose for their rooms. Inquire at your facility or help get a new program started. [I have done this during Easter and my nurses loved it]"

Here are the thoughts that I've gotten from members or thought of myself, without reading this list. I apologize for duplicates:

1. Make friends with other patients
2. Make phone calls and talk to friends
3. Play around on the Internet
4. Read the news
5. Read books
6. Do a crossword puzzle
7. Play board games
8. Play card games (like solitaire)
9. Play video games on your laptop
10. Have friends and family visit for a distraction
11. Bring your own clothes from home to change into because gowns are awful
12. Play games on an IPAD
13. Read your Kindle/Nook/etc
14. Walk around the hospital and get some exercise
15. Watch TV (but it always seems like nothing is ever on)
16. Connect with friends through Facebook/Social Media
17. Text your friends
18. Sleep through your hospital visit
19. Watch Netflix
20. Watch movies on Laptop
21. Decorate your hospital room
22. Listen to Music (with headphones, of course)
23. Make your own Youtube videos about your illness
24. Make and write your own blog about your experience in the hospital for others
25. Write reviews for the hospital nurses, doctors, and staff online
26. Talk to the x-ray tech and ask what’s the weirdest thing they’ve ever seen
27. Write stories, long or short
28. Write poetry
29. Play video games on your Nintendo 3DS
30. Skype with loved ones who can’t see you at the hospital
31. Complete a puzzle
32. Learn to knit

If you can think of anything I might have missed, please comment with a suggestion. I hope this will give you enough ideas to stay busy the next time you are hospitalized. I know that I will be loading up a to go bag!