Saturday, March 16, 2013


numb to death life's a polyp

The ostomy world lost another inspiring individual with great vision and drive, who helped start a revolution of education, support and life preparedness for youth with bowel and bladder dysfunction or disorders - the Youth Rally.

In our world of chronic illness it seems that life is so ever short and although these losses aren't on a regular basis, it isn't all that unexpected either. We have a lot we are contending with for survival and quality of life - most have several diagnoses competing for treatment. Whenever one deals with the GI tract, there's always a threat of malnutrition and dehydration interfering with one's daily tasks, one's health, one's life. This is why it's so serious of an issue for so many of us - our bodies are in a battle to survive when they aren't working properly to obtain life's necessities. Cancer seems to be another common sideline occurrence, whether it's within the GI system or elsewhere. And of course for those of us with FAP, cancer's always a constant threat. This is not intended to scare or stress anyone, only for others to better understand the daily risks we live with, why it's not a walk in the park. Because of being under attack so frequently, we each find our ways to cope and we must or we'll be eaten alive emotionally and mentally as well.

When people are faced with many losses of life, we tend to start coping by compartmentalizing and dissociating from the event, essentially numbing ourselves. This is extremely common and necessary for anyone working the medical field and it's a mechanism I've grown quite accustomed to utilizing.
Throughout my life, since I was a few months old, I've been surrounded by death. I have lost more family and friends than I care to recall. And working in the medical field, I've lost more patients with chronic or terminal illness than I can track. Although I am saddened by the death of anyone I know, I don't grieve for everyone the same way. When I've lost very close friends and family members, I grieve heavily for months, even years but when it's someone I'm not extremely close to or I have a professional relationship with, I pay homage to their life but there isn't really a grieving period allowed. When my grandfather died, I couldn't speak of him for close to 2 years without crying. When my aunt died, all I could manage to do was attend work and school, every spare moment I had I spent with my family for months sharing family stories. When my best friend died, I didn't sleep for over 24 hours and cried incessantly with his father for close to 6 hours.

I can't menally afford to grieve so deeply for everyone though and that's when the mind protects itself and compartmentalizes experiences. And thank goodness for the mind's own capabilities! I believe this ability of the mind also lends itself to the ability of those with chronic illness or in the medical field to often have warped perceptions of life and morbid humors.
So please don't be harsh on someone if they appear to not be affected as deeply by a death as another person, it may be all the person can manage for they're own surival.

Tuesday, March 5, 2013

Stressed Indeed

life's a polyp

Living with chronic illness almost mandates that one becomes accustomed to a high level of stress. Not only are we dealing with the physical stress of health issues and the stress of worrying about our health, we also have the stress of how our health is affecting or interfering with the other aspects of our lives.

I think I have a naturally high stress level, I can't think of a time when I'm not experiencing some type of stress - whether it's about my health, fears for others, or related to my responsibilities. I've always placed a large amount of stress on myself since I was a child, I was beginning to develop ulcers when I was in the 3rd grade! Sometimes when I look back on my life or focus on the stress I've endured, I'm amazed at how I've coped with it from such an early age. We all cope with stress differently and hopefully we improve our skills over time.

I don't know how I coped with stress before adulthood, and I'm not really even sure how I cope with it now. It's just been part of my life. It's similar to the concept that I don't know what it is like to feel good anymore, this is my normal and I don't know any different. Prior to adulthood, I maintained the attitude that I was completing what was required of me as I didn't view or believe that I had any other choice myself. I was under the care of my parents, who were making my healthcare choices for me. I gained my strength from my parents and had faith they were making choices in my best interest. I don't know how I deal with stress any differently now than I did 4 years ago when working full time at my 1st post-graduate job was so stressful on my body that I began to really question my health's durability for full time work. Now I work full time with a different company and at times I also do contract services on the side without any negative effects on my health. Although sometimes I worry that the mounting stress will begin to affect my health again.

Through our trials and errors we discover little tips and tricks that work best for us to cope with stress or fears. To reduce stress associated with responsibilities I've learned to keep a to-do list so that I'm not stressing about trying to remember all that needs to be done, to organize information to be easily accessible when needed, and to maintain up to date lists of upcoming deadlines. When dealing with health stress, I employ several old fashioned stress reduction and relaxation techniques to attempt to regain calmness. During health procedures or tests, I complete deep breathing, progressive relaxation, positive imagery, focusing, mantras, and I keep a special stuffed toy with me for added comfort and sometimes listen to music. When I'm feel stressed by overwhelming fears or stress of how my current health is or may become, I lean on my parents or spouse for support - for physical comfort, reassurance and to voice my concerns - as well as deep breathing or progressive relaxation. And many times I eventually collapse with exhaustion after pouring my fears out verbally and through tears, a much needed emotional release at times, leaving me feeling much more refreshed the next day.

There are times that stress can be good for us, it can serve as a great source of motivation. When stressed, we may become motivated to stop procrastinating on starting or completing tasks, set new goals, change our attitudes or behaviors. Stress can be trigger we need to finally start something we've been meaning to tackle and achieve.

Stress all depends on our mindset and how we view the stressor. We must decide how we're going to approach stress and discover how we best manage the stress. Only then can we let go of some of it or even all of it, to enjoy more of life. What stress management skills have you learned?

Sunday, February 24, 2013

Life Lost

life lost life's a polyp

The loss of life isn't anything to be taken lightly, whether it's naturally or by actions of one's self or others. I've shared before in previous posts how chronic illness warps our minds and perception, even in the realms of death. I was reminded of these effects when I heard about Mindy McCready's suicide last week and listening to the negative outlash toward her decision, I felt defensive of her. She endured a lot of pain and difficulty during her life, she was in a spiral of despair and although I cannot speak for her motives, I am not first led to believe her decision was of a selfish nature as many label anyone who has suicidal ideations, attempts or completion.

One thing I've learned during my journey with chronic illness and my time with friends of similar circumstances, is that we really can't judge what others are going through. This is primarily campaigned when discussing invisible illness but it's also in regards how life affects one's mental health, especially when chronic illness is involved. One of my best friends committed suicide, the pain of his chronic health issues became too unbearable for him. Although I deeply grieved for him, I couldn't be angry with him for his decision. I understood his decision too well, I too experienced health misery so great in my life that in a spiral of depression and pain, I longed for nothing more than peaceful death and for several years was suicidal myself. It is this personal understanding that I'm in favor of euthanasia, if solely of the individual's decision without manipulation or exploitation. I am not of the mindset that we are only given things in life that we are able to handle, there are experiences that way too heavy on the body and the psyche that are unthinkable and far too damaging. Those who are able to survive such experiences, I applaud them. However for me, there are several events that I would rather seek that eternal peace than to endure such experiences. Each person is different and so is each experience - but we can all empathize with the turmoil, the despair that another feels if only we try. Instead of blaming someone for their decisions or their desired intentions, let us be there for them and help them through the darkness the best we can.

I do not say such things to cast gloom on the hearts of others, but merely to remind us of empathy for the suffering others experience and to bring insight on their decisions. There are many examples of individuals who commit suicide as a manipulative exploit, to hurt others and for their own selfish gains. But there are many who are simply so hurt themselves or threatened with heavy pain - physical or psychological - that the only peace the individual is able to see is within death.
We need to support one another and any individual with suicidal ideations or plans most often are receptive to support, if only asked about what they're experiencing. Sometimes we miss the signs of how deeply hurt someone is, how close they are to the edge. We cannot blame ourselves if we miss those signs, but we can arm ourselves so that we may be better prepared.
Please visit Suicide Awareness Voiced of Education for information on suicide, warning signs, and ways to help and support someone experiencing such deep turmoil and perhaps together, we can bring more back from the edge.

Tuesday, January 29, 2013

Mere Exhaustion

life's a polyp

Exhaustion; physical, emotional and mental exhaustion must be a mandatory symptom of chronic illness that we just seem to not be able to forgo no matter how hard we try. Sometimes exhaustion is inescapable, but we can combat it.

Physical exhaustion from the symptoms of chronic illness can leave us at times with very little energy, that even voicing words is too much. As a child, my parents began to understand my hand signs as a communication of my needs as talking simply took too much out of me. But that's not the only source of exhaustion that we've become oh so accustomed to in our daily lives.

Besides symptoms of the chronic illness, associated issues may arise that further complicate how we feel physically. For example, anemia and low B-12 is a common occurrence for individuals with ileostomies due to poor absorption of nutrients. Other electrolytes may also be out of balance that may affect energy levels.

I would be able to be so much more productive if after a day of work I didn't feel completely exhausted of all energies. I seem to have the most energy in mid morning to early afternoon - 9 am to 1 pm. But my energy begins to wane as the day draws on. I'm currently at my most healthy state since childhood, so it's not even only physical exhaustion that overcomes me but it's also emotional and mental. Part of it is because of my job, it by itself is mentally and emotionally draining. But it's also more than that. The stress of chronic illness can't escape any realm of our lives or our beings. Even when we physically feel well, the stress remains and will affect our emotional and mental selves in some fashion, even when we are coping appropriately as well. It's just a lot to bear.

Recharging ourselves as much as we can is a necessity. Taking a break to do something enjoyable or relaxing, meditation, taking a brief nap, talking with others to share daily stresses, volunteering, physical activity and similar actions help to recharge us and shed the stresses of the day so that we may focus elsewhere.

Depression is very draining on the psyche as it continually spirals down as long as the vicious cycle between thoughts, behaviors, and emotions remains constant and change is held at bay. It's depression's nature to lead us into a withdrawn state, so emotionally exhausted that we're almost incapable of reaching out to others, to maintaining communication. Merely speaking is too much energy.

This cycle must be broken though for us to push through and reclaim our lives. Such a simple, yet intensely difficult task of just changing our thoughts, behaviors or our emotions will make the difference to allow for a gradual climb out of the darkness. Anti-depressants, specifically in combination with counseling, are helpful in combating depression and this combination is most effective for despiraling the despair. Additional support resources such as support groups, patient hot lines, summer camps, activity groups are examples of some of many resources available. There are resources specific to illnesses as well as for care giving, mental health, and general.

Arming ourselves with a holistic approach to address each realm we are best suited for the chronic illness of exhaustion that accompanies all chronic illnesses. Keeping our energy levels at a manageable level will help us to keep our other symptoms in better check and will help us to cope with our daily struggles.

Tuesday, January 22, 2013


life's a polyp

Living with chronic illness and secrets seem to go hand in hand. Not everyone needs to know our business and for survival and personal protection, it's in our best interest not to be sharing our life history with just anyone. I don't believe it's healthy to be willing to share anything and everything with anyone. It opens you up for any kind of unnecessary hurt that could easily be prevented with discretion and judgment.

It's off putting when someone unprovoked dumps their medical history on others. It makes you stop and wonder what that person's end game is, what's their ulterior motive. It's just in bad taste. It's fine to share with others but we need to be careful what we share and with whom. My policy is that I only share what's relevant with those I trust and that's going to vary from person to person.

My husband is the only one I've dated that knows absolutely every single detail about my health, I'm as open with him as I am with my parents. I'm very open with my parents as they guided me through all my health issues and are able to relate to my issues and needs. Some past boyfriends new some about my health, some more than others but even the former boyfriend who I had plans with to marry, didn't know every detail. One must be careful even with persons thought to be trustworthy, sometimes that perception is merely a facade.

I'll freely discuss any aspect of my health with others in the health circles for support, education and bonding. One of my friends within those circles knows the most out of everyone I'm involved with in the health circles. I'm not avoiding giving details to anyone else, it just hasn't necessarily been relevant for discussion and of course not everyone is as easy to share problems with to commiserate with one another.

Another area though that requires discretion is the work field. There are so many employers who will use any excuse for getting rid of an employee, even if it absolutely has no bearing on one's work performance. Many employers, once unhappy with an employee, will begin to devise a strategy to be able to end the employee's employment with the company. Whether it's gradually increasing workload, adding new responsibilities and duties to build a case for reprimanding an employee to inevitably forcing a decision from the employee - quit or be fired. Not only that but other coworkers can be just as devious. My point is, even people you think you can trust, you can't necessarily trust and you don't want to allow others to use information you've volunteered against you one day.

It can very trying though at times to bite your tongue and not share with another person. I work in the medical field and although I don't have the same medical diagnoses as the patients I work with, I can personally relate with symptoms my patients report. Fatigue, stomach issues, diet considerations, medications, weakness, pain, fear and anxiety, PTSD, etc. They're all symptoms and issues that are typical among any group of persons with any chronic illness. Each illness will have their own symptoms and issues, but there tends to be a base set that each group can relate to. It is this commonality that makes it hard for me not to share my own experiences with patients. It's very frustrating and even insulting (although it's not the person's intention or even understanding) when someone tells you that you have no idea what's like to be sick, to have been in the hospital, to experience xyz, simply because you happen to look healthy. It makes me want to scream sometimes. I don't like to make assumptions about others because of just that. A person can look like anything, that doesn't mean there's nothing else going on - physically, emotionally, mentally, financially, etc.  You just don't know. I'm not going to compare my experiences to anyone else's, but I've been through my share of personal hell - I don't need to compare horror stories with someone else to feel better about my own or diminish others. I do like my experiences to be acknowledged though for what they are - that you aren't the only one with a history. But again, it isn't appropriate for me to share my history with my patients, especially not in any detail.

No matter how many secrets we keep, there's always someone who has similar, if not the same, secrets. And the saving hope is that we each find that person or at least a person or two that we can share all those secrets without fear. Because although not everyone needs to know our secrets, it's also not healthy to keep them all to ourselves without sharing with someone. What are some of your secrets?