A Scarred Life

Throughout the day while at my desk, clothes shopping, getting ready for a function, or even just lying in bed I'm reminded of what once was and what threatens the future by a single scar and it's never healing abnormality. This single spot as well as occasional tingles along and under the scar lines will never let me forget. On occasion, I still have the sensations of an active stoma and am urged to reassure myself that my reversal wasn't a dream, but remains reality.

Of course I have the typical, vertically long slice down the middle - from the groin to the rib cage. And after repeated slicing in the same line,  it has become rather deep as it curves around my belly button. Accompanying this is a scar on each side of the abdominal length reminder of the previous stomas - one in the shape of a hash mark and another a deep single slash with it's own peculiar complication presented as a knob at the end that never truly heals itself.
This spot is a constant source of irritation and serves as a constant reminder of what I've endured. The knob presents itself as if a stitch is lodged deep inside, forever trying to work it's way to the surface to be released from the captivity of the body. Alas, whether a stitch is embedded in my skin or not, there isn't any hope for discovery. This pustule like spot becomes irritated periodically and collects within itself a clear liquid that pushes its way to the surface that vexes the skin until without conscious act, my fingers are led to this knob to kindly relieve the area of its' building pressure. Once it's devoid of the liquid, it lies flat again against the skin and maintains a slightly open red dot that taunts me to attempt to discover what may lie beneath the skin. The few times I have relented to the taunting of this red spot has been painful as I dug under the skin as deeply as I could allow myself with needles to attempt to catch what may be the cause of such irritation without any success. This spot is also indifferent to hot compresses and ointments. The only time this spot has begun to heal was when I tanned for a month's time, the heat acted to dry out the gradual collection of liquid. However, after tanning completed, the collection was again started. Like most of my health, this also is an anomaly that my doctor and others have been unable to explain.

And then there are other scars that aren't as blatant although continue to serve as visible reminders. Multiple scars on my chest from the repeated placements of central lines and their stitches, a scar on my lower abdomen from a drainage tube, and countless scars on my hands and crook of the elbows where IVs were inserted and needles for lab draws. I do worry about future accessibility for IVs and needles though from all the scarring.

I know some are deeply bothered by the presence of scars and view scars as bodily imperfections and reflections of one's self worth. I don't subscribe to this perception or interpretation of the role of scars on one's life or meaning and I urge you to refrain from such a perception as well. The visibility of my scars have never been bothersome to me, I rather view them as a badge of survival, an so it's never mattered to me when others see or even comment on my scars. In fact, I find it a bit humorous when strangers react to seeing such a scarred up abdomen as they try to ascertain what the cause is of such scars.

It was this attitude that kept me from ever considering products and procedures to lessen the scars. However, when my gynecologist asked to complete a series of laser procedures on my abdominal scars to allow the scars to lessen in color and size as part of a research study, I consented to undergo the procedure. The laser procedures were short repeated sessions and the heat of the laser was uncomfortable, although not unbearable. The heat was most bothersome on my freshest scar, the deep single slash with the slightly open knob. Each session let my abdomen red from the laser's intense heat and it was a display of gradual changes. I was surprised at the results, not only did my scars reduce their pink or red hues and blend in more with the surrounding skin, they also became less puffy and less deep so that they're more level with my skin. I wouldn't have sought such a procedure if it hadn't been part of a research study at no cost to me but I'm glad I had the opportunity to benefit from the laser procedures.

With or without treatments to reduce the visibility of scars, don't let your scars hold you back. Scars don't define us and aren't a reflection of negativity, imperfection or damage to the body. Rather, they are merely reminders of what has been survived. And that, indeed, makes a pretty awesome, empowering statement of self.
I leave you with quotes that speak to the strength of a life with scars.

• Scars remind us where we've been. They don't have to dictate where we're going. - Agent Rossi, Criminal Minds
• Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. - Kahlil Gibran
• In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they're still beautiful. - Alice Walker
• A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl. - Stephan Hoeller

Numbing

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.

Stressed Indeed

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?

Life Lost

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.

Mere Exhaustion

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.