A Moment's Time

In the world of chronic illness anything can happen in a moment's time. Sure, this is true of life in general. However, living in the regularly unpredictable state that is chronic illness this is all the more true. As the chronically ill, we're more susceptible to change and more well-versed in change. We are pushed to our limits to adapt to an ever changing state.

Our health status ebbs and flows, pulling us into streaks of good health only to plummet us in the depths of ongoing poor health. This can happen from day to day and if we're lucky we'll have years in between the tides of changing health. With such changes in health, we become susceptible to a ripple effect of changes overflowing into the rest of our lives - employment, school, social, romance, etc. We may become unable to continue working or finishing school. We experience impacts on our social lives as we're forced to alter our activities with last minute cancellations, limiting activities, or completely giving up some of our activities. We're often faced with difficult choices as we determine who to share our lives and health with - platonically and romantically. We make ourselves vulnerable to those we care to know better. We face the risk of rejection and discrimination when we open up to others. We may even lose the one we loved if our partner no longer has the fortitude required for partnering with someone with chronic illness. And sometimes change can even mean facing death.

And yet, somehow all these changes and risks can be worth it.

With any change we are provided opportunities for growth. We can embrace our changes difficult as they may be. Achieving the embrace is made sweeter by the height of change. We are pushed and pulled, stretched to our breaking point and by the sheer strength of our tenacity, our own courageous determination we are able to rise above the change and make our own changes within ourselves and our lives. It may not be the change we initially wanted but we can make a change our change. We can own it. By owning change, we no longer let it rule and control us. Instead, we strengthen ourselves to rise above the worst of changes and learn to thrive in the face of adversity.

So how do we rise above and grow from this adversity?

• Healing and growth begins with acknowledgment

We can't fully process and move forward until we realize what we're feeling. Only then are we able to start processing our feelings about what we're facing. The time required for processing will vary from person to person and situation to situation. Processing can't be rushed, it must be felt and it can take a lot of mental energy. But once we process we will find ourselves on the other side and much healthier mentally and emotionally than where we started. It's usually not an easy process...but the end result is worth the time.

• Find and use support.

Although there is definite strength in the ability to face adversity and change on our own, it doesn't mean we have to face it alone or that we necessarily should. The need for belonging and social support is ingrained in us psychologically and with good reason. The ability to face difficulty alone is not the same as refusing support. The ability to stand alone is good to have but so is the ability to ask for and accept social support. It's guaranteed that there is someone who is or has gone through a change similar to what any one person is presently or will ever face. And with the advancements of technology and social media that is readily available finding someone who knows what we're going through is easier now than ever. Take advantage of it.

• Change perspective and goals

There is such a thing as the cognitive triad. It consists of thoughts, behavior, and mood. Each part influences the other and changing one aspect with change all of them. So a great way to adjust to change? Change one of these aspects. And what better way than changing our perspective and our goals. Instead of focusing on the negative, reframe the thoughts to center around what is good about the change, what is still good about the situation, and what good can come from it. Changing goals gives us something to look forward to, something to strive for. Without goals, we're left aimlessly going through life without any real purpose. We need goals for our future.

• Acceptance is key

Acceptance won't come quickly in most cases. But it needs to be the end result - for one's sanity and well-being. We focus so much on the change itself and what that embodies, what we've lost because of the change. It consumes us and we begin to feel like we'll never escape. But we will...with effort. No matter how hard it becomes, we must strive for acceptance. That doesn't mean we roll over and give up. No, we find happiness in where we are at in our life and enjoy the present moment. Because we never know when that moment will change again. That's the beauty and monstrosity of life - change happens in a moment's time. Finding acceptance is always beautiful though.

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  

Using a Bidet for GI Disorders: A Review

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

As a GI patient with Short Bowel Syndrome (SBS) my doctor recommended using a bidet to improve personal hygiene and reduce skin irritation. SBS is a rare disease resulting from removal or loss of function of the small and/or large intestine. Among the complications that arise from loss of intestine it is common to have frequent severe bouts of diarrhea even numbering 20+ bowel movements a day for some individuals. This often causes moderate to severe skin irritation, pain, and even bleeding.

Due to the effects of SBS, I was encouraged and nervously excited to try out a bidet.

Bidets are known as an environmental friendly option to toilet paper. Toilet paper can be harsh on the skin and leave unwanted residue. A bidet reduces waste while improving skin care through thorough cleansing. 

I received a Luxe Bidet Neo 185 which attaches easily to any toilet. The Neo 185 has a dual nozzle feature with two settings for posterior and feminine cleaning. The nozzles are protected by a nozzle guard gate and are retractable with a self cleaning option. With a turning control knob, the Neo 185 allows the user to easily control the amount of water pressure preferred for comfortable use and optimal cleansing.

Luxe Bidet Neo 185 Kit

The Neo 185 comes with the equipment necessary for installation and use in a convenient small package. The installation instructions were to easy to follow and installed within minutes. I had never used a bidet previously and was nervous about my first experience with a bidet and appreciated the included brief guide for first time users.

My main goals with the Neo 185 were to reduce skin irritation and reduce or eliminate use of protectant ointment for skin irritation. I required using skin ointment quickly after my Ileoanal Anastamosis in 2001 and hadn't been able to forgo using ointment since. I began using the Neo 185 with each restroom use and discontinued using skin ointment. After one full day I noticed my skin irritation reducing and increased comfortability without my skin ointment.  Feeling comfortable to no longer use ointment on a regular basis was a personal breakthrough.

Luxe Bidet Neo 185 Installed

Flare up episodes of excessive bowel movements with SBS are common causing the skin to become severely irritated and painful from frequent bowel movements and the harshness of toilet paper on already sensitive skin. I still required skin ointment during a flare up. However, using the Neo 185 during a flare up was extremely helpful as the water simultaneously soothed and cleansed the skin allowing for reduced use of harsh toilet paper. The feminine cleaning setting is an added benefit particularly during menses to enhance sanitation and a sense of freshness and cleanliness.

The Neo 185 is a non-electric cold water bidet. I would personally prefer a warm water and a warm air dry option, however, I was pleasantly surprised that the cold water isn't uncomfortable. With the water pressure knob, the water pressure can be adjusted from a light to strong stream as slowly or quickly as preferred without rough pressure. This adjustability helps to increase comfort level particularly when adapting to using a bidet.

I highly recommend the Luxe Bidet Neo 185 especially for use by those with GI disorders to reduce skin irritation and improve hygiene. The Neo 185 can easily be purchased through Amazon at a reasonable price and is well worth the investment for a hassle free bidet.

Defending Invisible Illness

"You don't have anything wrong with you. You have no issue walking." he said with dismissing disdain for what I had shared as I tried to empathize with him.

My word alone that I have a chronic illness wasn't enough for another person with chronic illness too.

Mine just happens to be invisible.

Sadly, I've become accustomed to others looking at me and automatically judging that I couldn't possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times but for the most part I've learned to shrug it off. After all, I do have an invisible illness. Others aren't able to visually see that my body isn't able to absorb nutrients fast enough to keep up with my Short Bowel Syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I'm experiencing a severe flare up of my SBS when I'm forced to use the restroom every 5-10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to as movement agitates my short bowel particularly during a flare up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.

It's not right for others to make assumptions and judgements about what a person may be
experiencing based solely on looking at that person. But it is understandable that others wouldn't be aware without asking. It's harder to understand though when the person judging another also has their own chronic illness. Those of with chronic illness tend to bond with others with chronic illness as we find understanding, comfort, and safety amongst each other. So we don't expect someone in a similar situation to judge us by looking at us in the same way as others without chronic illness frequently do.

There's no question that continued education and awareness is necessary outside of the chronic illness community. Occasionally we're reminded that continued education and awareness is also required within the chronic illness community.

When sharing with others we need to weigh our timing and our content. With many things in life, there's a right time and a wrong time for anything and this includes our education efforts. If it's the wrong time, our "audience" may not be as receptive as other times. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation but is nonetheless important. We don't want to present ourselves as victims or as comparing ourselves to another's experiences.

We want to be understood in our own right while respecting and gaining common ground with others. During the in between time of progression, it's important for our own peace of mind and well-being to remember that others are not as open to understanding another's chronic illness and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally but rather offer the understanding that we are not receiving from these individuals. And in the meantime may we enjoy and encourage one another in our trials.

Iron Infusion

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.

I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.

It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.