Accommodating Holidays

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

Chronically Dating

I had left behind the dating world for nearly 7 years and I thought I was leaving it behind permanently. However, after my marital separation and divorce I found myself once again dating. I was suddenly thrust back into situations calling for me to decide when, what, and with whom to share the details of my chronic illness.

I previously shared how I've chosen to disclose my health and particularly my past with an ostomy. I am much more confident in my disclosures than I once was when I was younger. I'm now comfortable with someone not accepting me because of my health. I've learned that if another can't accept my health, then I don't need that person in my life. In fact, events of the last year have lent to my improved ability of letting go in general.

Dating after divorce with a chronic illness has been interesting to say the least. I've become increasingly open about the details of my health and illness with suitors and I've been met with overflowing acceptance. I've always been accepted by those I've shared my health with previously, however, this time around the dating world has been filled with even more acceptance. Perhaps dating in my 30s is part of the difference as we tend to view the world, ourselves, and others in a different light than we did in our younger years. This may also explain the differences in reactions I've experienced since re-entering singledom.

Although I've been accepted by each partner, there were some very different reactions. My suitors ranged from "I'm ready to take care of you in whatever fashion required" to "I can't lose you early on in your life". While one suitor was eagerly ready to spend whatever amount of time my life holds for me caring for me and my health needs another suitor was so concerned about losing me early in life due to the likelihood of cancer that he wasn't sure he would be able to handle a romantic life with such a very real expiration date.

I was shocked to actually encounter someone who was so concerned about being able to handle the real possibility of my own death at a relatively young age. I am accustomed to death, particularly the threat of my own that sometimes I forget what others may feel or experience in relation to my own mortality. I also wondered if this person would be the individual those of us with chronic illness all dread: the person who leaves because of their own inability to handle life with chronic illness.

I'm not sure how we guard ourselves against such individuals as I haven't truly been in such a situation. Guarding our hearts is a wise move to a certain degree. At some point, we either must trust our partner or we must let go. The degree to which we scrutinize our potential life partners varies from person to person and experience to experience. I can only urge others to be aware of their own comfort levels and move within those boundaries. We aren't required to move past those boundaries until we are ready, whatever those boundaries may be. Dating isn't always the easiest lifestyle and chronic illness can complicate dating life. However, I view loving yourself first and finding your own happiness as a fundamental key to tackling life, including the dating world. We don't need to seek love and acceptance from others when we find love and acceptance from within ourselves. Once we have conquered this feat, any love and additional acceptance from others becomes a shared joy rather than a request for validation and esteem that we have yet to afford ourselves.

I found part of accepting my life and in particular my divorce was to also accept the possibility of spending the remainder of my life alone. With marriage, I had a lifetime caregiver if needed. With divorce, I gave up that lifetime caregiver for a life of uncertainty on my own terms. I don't know what the future holds, but I've accepted the unknown. I do know that no matter what is in store for me, I create my own happiness and I can survive. The dating world is no different - we hold within ourselves the power for happiness and survival.

A Surreal Life

A year ago my life was very different than from what it has become, it is drastically different from 2 years ago. I never would have imagined that I'd be where I am at now in my life. I foresaw my life being very different in 2016 than what it presently is. And yet I'm full of gratitude and amazement as I struggle to believe my present life is reality.

To fill you in, a lot has transpired in the last 24 months:

• I decided not to have any children because of my health and FAP 
• My husband was diagnosed and hospitalized with diabetes
• My marriage began to fall apart
• I entered a bout of extremely severe depression
• I was hospitalized for the first time in 8 years
• I developed increased chronic pain and started having chronic nausea
• I went on a dream family vacation to Alaska (highly recommended by the way)
• One of my very beloved great uncles died at 99 years old
• Estrangement from some very dear friends and family members
• Marital separation
• Moved back home to my parents
• Divorced
• Bought a house
• Became independent once again

Not everything that has happened in the last 2 years has been a hardship. In spite of very difficult, trying situations throughout the last 2 years every situation has held life lessons for me and has helped me grow as an individual.

I psychologically surivived situations I never imagined I would face and wasn't sure I would survive at the time of their occurrence. And yet, with each hurdle I became stronger and fiercer. I never saw myself as a survivor or as a brave person before in spite of surviving 7 surgeries, near death experiences, and the cancer that was developing in my body. I've lived through PTSD, suicidal ideation, and severe depression. I've survived the physical and emotional loss of many. I survived. I learned I am strong and after I've faced physical and psychological torments, I can survive anything.

It's true that we don't realize how strong we are until we have no other choice. Feeling on the verge of a mental breakdown for months on end last year, my mind somehow held onto the smallest amounts of hope and strength to keep me alive to fight another day. And now, I'm stronger than ever before. Now, I'm prepared to fight whatever future fights may be in store for me. I know I've survived the worst psychological torments I've ever encountered and it's only up from here. Even my bad days are not my worst days because those are behind me.

I've harnessed my inner strength that for far too long I didn't know existed. It's easy to ignore our inner strength. We tend to minimize our feats of mental strength. We become accustomed to survival mode without acknowledgement of what it actually takes to survive. We get caught up in surviving day to day without relishing in the fact that we are surviving. Let us stop cheating ourselves. Let us honor our strength and harness it. When we bear witness to our strength we honor ourselves, our survival, and our life. We begin to free ourselves of the draining mental fight by power housing our strength. Thereby allowing increased utilization for continued survival and breaking free of our mental chains. And after the fight, we will realize that we deserve to be free.

Fresh Assist: 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 an individual with chronic GI issues due to Short Bowel Syndrome (SBS), I'm always excited for anything that can help reduce the side effects of SBS. SBS causes frequent diarrhea that in turn can cause raw skin, itching, burning, and painful sensations. It's common for individuals with SBS to utilize products such as flushable toilet wipes and creams to aid in hygiene and soothing the bothersome effects of SBS.

So when I was asked to review a similar product, I was happy to do so. 

I received Fresh Assist Spray, which reinvents the flushable toilet wipe by making available a conveniently sized, 2 ounce portable spray bottle with a solution to be sprayed on toilet paper prior to use after a bowel movement. I used the recommended spray amount with each use and found the solution to be a comfortable room temperature. I like using a spray bottle as one can spray the solution at their own discretion. This is not an option with conventional flushable toilet wipes, which can be too wet and cold. An additional benefit over wipes is the spray also reduces the amount of waste flushed with each bathroom use thereby being an easy, eco-friendly option.

Fresh Assist Spray comes in two fragrances: Soothing Lavender and Cooling Chamomile. I received Cooling Chamomile and was content with the subtle fragrance that was balanced well. Some products are too heavily scented leaving the user with a noticeable odor. This, however, was not the case with the spray. I was concerned about using a fragranced product on my sensitive skin but was pleasantly surprised that the scented product didn't cause any burning sensations on my already sensitive, at times raw skin. To my surprise, the solution didn't cause any burning or stinging sensations during any of the times of use no matter the condition of my skin.

I found Fresh Assist Spray to only require the recommended 2-3 sprays and that it effectively improved cleaning in a single wipe. I use a skin protectant cream regularly to combat raw skin from the effects of SBS and found the spray to cut through the cream without difficulty. The solution provided a cool, soothing sensation that reduced itch and soreness. I found the soothing effects of this spray to become addictive as using toilet paper without any spray was immediately uncomfortable and rougher feeling than with the spray. I used this spray with a 2-ply soft tissue which proved to absorb but not become disintegrated by the solution. I would caution using this spray with a 1-ply toilet paper as the tissue would not likely hold up to being sprayed. However, I did not experiment with 1-ply toilet paper so I can not fully speak to the integrity of 1-ply toilet paper with use of this spray.

Although I am heavily dependent on the use of a skin protectant cream with each bowel movement, the effectiveness of Fresh Assist Spray left me being able to reduce use of the skin protectant cream after every bathroom trip. I didn't feel comfortable discontinuing use of the skin protectant cream altogether but I was able to reduce using the cream to after every 2-3 bathroom trips. Based on this, with regular use it is possible that this spray could aid in healing raw skin to the point that protectant creams are no longer required.

Based on my experience with Fresh Assist Spray, I would highly recommend use of this spray for anyone. It is particularly useful for individual with GI issues that cause painful skin conditions from frequent bowel movements. The spray bottles come in a reasonably priced single or two pack and lasts a relatively long time even with 3 sprays a use. 

Standing Together

Today was a physically taxing day. I woke up not feeling my best and it worsened as the day drew on. I ended leaving work early due to stomach pain and bloating. As soon as I returned home, I crawled into bed to rest. I was worried about feeling better in a few hours. After all, I had to prepare for an evening interview with Lee Silverstein, The Colon Cancer Podcast.

It's amazing how much rest the body can gain from simply lying in bed for a couple of hours. My body knows that once it's lying down that it doesn't have to work hard or stress. My mind can relax with my body and together they can begin to mend themselves. And it worked; although I don't feel like completing projects this evening, I am left feeling energized with adrenaline and hope for the future.

I must give credit for the rejuvenating energy to my conversation with Lee though. Sometimes it's hard for me to speak with others. I often find myself emotionally drained after visiting with others. Perhaps that is more to do with my line of work as a medical social worker. Sometimes talking is the last thing I want to do after a long work day of focusing on and assisting others with their life issues. But after conversations such as tonight's conversation with Lee, I'm reminded just how much we need others in our lives. Support, whether it is online or in person, is an integral part to life and for our well-being.

The internet has become alive with multiple support resources for every issue imaginable. I'm amazed by how tangible support is now than what it was even just 10 years ago. With a rare disease, I didn't know anyone outside of my family for years with Familial Polyposis. And now there are social media groups and websites solely devoted to Familial Polyposis. And the case is the same for countless other rare diseases.

As wonderful as these online support resources are, we mustn't forget how important in person support remains. It's easy to take the easy way of communicating digitally with others through text and online messaging services but there still remains nothing quite like in person visitation. In person visitation forces us to reduce our isolation that we often succumb to with chronic illness due to how debilitating our health symptoms can become. In person we can give and receive physical support - hugs, shared tears, even household assistance.

In person visitation can be physically stressful as it forces activity upon us yet I'm always glad I forced myself to leave the house or prepare for a visitor afterwards. It reminds me of the importance of friendships. Not everyone we talk to has to have chronic illness so let us not abandon our other friends.

If you're isolating yourself because of your health, you can break through the isolation. Remember, isolation can lead us to depression and can worsen already existing depression. Depression will tell us not to interact with others and by engaging in activity we loosen the bonds of depression. However, I understand how daunting activity and socialization can be, especially under the stress of depression. Because of this, I start with a small, achievable goal as this reduces the feeling of being overwhelmed and with each small step, the next becomes easier.

We all need support, no matter who we are or what we're facing. Reach out when in need and reach out to another during their difficult times. Socialization is a wonderfully rewarding gift we can give each other.