Tuesday, January 29, 2013

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 It's depression's nature to lead us into a withdrawn state, so emotionally exhausted that we're almost incapable of reaching out to others, to maintaining communication.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.

Friday, January 25, 2013

Advocacy Opportunity

Recently one of the Virginia House of Representatives' subcommittees unanimously voted against HB 1375 - Virginia Restroom Access Act thereby killing the bill. Please read the bill and if you're in agreement that individuals with medicals issues like ourselves should be granted the right to use a restroom when required, please contact the delegates of the subcommittee and let them know how you feel about their unanimous decision to deny restroom access to individuals with bowel diseases.

First contact Delegate Krupicka and thank him for introducing the Restroom Access Act:
Delegate K. Rob Krupicka
(D) - House District 45
(804) 698-1045
DelRKrupicka@house.virginia.gov

Then contact these delegates and let them know how denial of restroom access affects you and others with bowel diseases:
Virginia House of Delegates
Committee for Courts of Justice
Sub-Committee: #2 Civil

Delegate Salvatore R. Iaquinto, Chair
(R) - House District 84
(804) 698-1084
DelSIaquinto@house.virginia.gov

Delegate Terry G. Kilgore
(R) - House District 1
(804) 698-1001
DelTKilgore@house.virginia.gov

Delegate G. Manoli Loupassi
(R) - House District 68
(804) 698-1068
DelMLoupassi@house.virginia.gov

Delegate Gregory D. Habeeb
(R) - House District 8
(804) 698-1008
DelGHabeeb@house.virginia.gov

Delegate Peter F. Farrell
(R) - House District 56
(804) 698-1056
DelPFarrell@house.virginia.gov

Delegate J. Randall Minchew
(R) - House District 10
(804) 698-1010
DelRMinchew@house.virginia.gov

Delegate Joseph P. Johnson, Jr.
(D) - House District 4
(804) 698-1004
DelJJohnson@house.virginia.gov

Delegate David J. Toscano
(D) - House District 57
(804) 698-1057
DelDToscano@house.virginia.gov

Delegate Jennifer L. McClellan
(D) - House District 71
(804) 698-1071
DelJMcClellan@house.virginia.gov
And if that alone wasn't enough to rile you up. Read this article about the bill and contact the journalist to share how bowel diseases and denial of restroom access affects you and others at kerry.dougherty@cox.net


Your efforts inconjunction with hundreds of others will make the difference in education and advocating for awareness, understanding, research, treatment and equality. If you are aware of other similar actions discriminating against individuals with medical conditions, please notify me so that we can all work together to raise awareness and advocate for fair treatment.

Tuesday, January 22, 2013

Secrets

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?

Thursday, January 10, 2013

Near Miss

I've addressed some of the ways chronic illness and near death can play havoc on our perception, fear of loss, and even our humor of individuals in Death Warp and in Warped, Skewed, Jacked Up...Whatever. A close friend and I frequently share health experiences with one another and share a common warped sense of humor and views on life and death. We both tend to be death oriented due to the altering effects of health and PTSD on the mind. I've noticed this is common among others in our health circles, it's a mix of coping with the tragic and reshaped perception of life and what once and should be, and all the near misses of death.
It's those near misses that we tend to become fixated on and that ultimately is what alters our perceptions; whether it's a near miss of someone physically dying and returning to life, experiencing and out of body experience, realizing death was drawing near, or simply surviving the unexpected. Each person's experiences are different, they can be incredibly peaceful or can be so terrifying that we either fear the moment of death or we long for the moment to be completed.
As a child I survived the unexpected more than once and was left with scars upon my soul and psyche so deep that I emerged with intense rage and hatred. However, during the year of high school when my health rapidly declined I was aware of death quickly approaching unless something dramatically changed with my health. I was so sensitive to this awareness that I said my goodbyes to my parents in case I wouldn't later have the chance. My doctor later told me that she never knew if I would live from week to week during that period. I had never experienced such a peacefulness and calmness as the time spent telling my parents goodbye. I've never had an out of body experience and I've never physically died, but in that moment I knew that death was a greater peace than anyone can imagine. Since that moment, I have longed for very little other than to experience such grand peace once again. The combination between this longing for eternal peace and my own drive for perfectionism, I am compelled to complete preparation for life events, including my own funeral.
Since high school my funeral has been planned out to the details of the itinerary, even the music to be played and letters to be given to specific loved ones, I have an Advanced Directive and a Last Will and Testament, and although I haven't purchased my tombstone I do have one picked out with what I would like engraved upon the stone. I have left detailed instructions for whomever I outlive in regards to my possessions, my funeral, and my legacy for any children my husband and I may have. Frequently I have compulsive thoughts leaving me wondering what it would be like to drive or fall off a bridge, drive or run into oncoming traffic, drive into a tree, etc. This is similar behavior to my close friend, who finds himself writing his own obituary to pass the time and considering those who have already passed on as being "lucky".

Few people can understand or even grasp why we are so death oriented, even my own husband frequently asks me "what is wrong with you" and "why are you obsessed with death". He simply can't relate on that level with me. Fortunately, there are many individuals with the health circles who are able to relate due to their own similar experiences. It is within these close ranks that we may find comfort and temporary peace together during our time toiling this earth as we wait for our eternal peace.

Thursday, January 3, 2013

Painful Distrust

The betrayal of someone once trusted with your life is so significant it often is emotionally and mentally scarring. In Medical Angels and Demons, I shared experiences of blessings and torture with various medical providers I've had throughout my life. The betrayal of trust I suffered by providers at the children's hospital I attended as a child continues to haunt me to this day.

I am extremely suspicious of other medical providers until I am convinced that the provider is competent and has my best interests as a patient at heart. I am filled with regret, pain and rage when recalling experiences with these past providers and my trust with other providers has been tainted. My life would be completely different if I had a competent surgeon, if my care hadn't been allowed to be primarily directed by those 3 residents, if the emergency room team had been thorough and attentive. Had the surgeon listened to my parent's concerns my ostomy wouldn't have been placed on the wrong side allowing for my intestine to wrap around itself and other organs, if the emergency room team hadn't sent me home with the simple diagnosis of being a whiny child then the extent of dead intestine could have been prevented, if those residents hadn't been charged primarily with my care rather than the surgeon, perhaps more testing and treatments would have been completed for better, more directed care and treatment. The pain inflicted and level of distrust between these past providers is so great that it is deeply ingrained in association of the hospital and its affiliates as well. I would never be able to work for this hospital unless absolutely required to in order for survival. I would never be able to bring myself to taking any child of mine to the same hospital, even though it is a children's hospital that is supposed to be great with children and advanced in the care and treatment of children.

Never estimate the stupidity of this hospital or the individuals who work there.
A few months ago I suddenly realized that I should be aware of who the residents are that were assigned to me as a child so that I may prevent unknowingly becoming associated with them.
I can't even trust the hospital's medical records department to provide copies of, guess what, medical records. In my quest to uncover the residents' names, my requests for medical records from the children's hospital has been refused twice. The first time I was told that the request was illegible, even though the medical records staff could read my name, phone and address well enough to call and mail me a refusal. When questioned about the illegibility, I was then told that I must not have completed all the required information. My second request has yet to receive any communication whatsoever, even though the records department advises that records will be provided within 5-7 business days. I've resolved myself that I will be forced to go through my doctor's office and dig through my old charts in order to find the information. I would have done this originally but I thought it would just be easier to go through the hospital's medical records directly. How I was wrong. It'll be easier to sift through my multiple, overflowing charts at my doctor's office myself than to have anything sent to me from the hospital's medical records department.
I also think poorly of the hospital and its affiliates for charging individuals money to visit admitted patients, attend doctor appointments, or for patients to park at the hospital while receiving care. Yep, you read that right. I understand a hospital not wanting non patients or hospital visitors parking in the hospital parking lots, but there are other ways to deter illegitimate parkers.

This month I plan to start delving through the old records at my doctor's office to uncover the truth of the identities of those residents and protect myself from potential future harm for those individuals. I hope that those residents are now competent practicing doctors, but I would never be able to bring myself to trust them again with my health and life.
Sometimes we must make extra effort in order to protect ourselves and help calm our neurosis developed during chronic illness and medical traumas. This is a survival tactic and with such efforts, we are more apt to survive.