Saturday, June 1, 2019

Cruising to Hawaii and Beyond

palm trees on beach

My parents and I decided to embark upon another cruise for this year's family vacation - this time to Hawaii and British Columbia.

Lahaina, Maui
My mother and I both have Familial Adenomatous Polyposis and Short Bowel Syndrome - she has an ileostomy whereas I have a straight pull thru. Vacations and activities are always a concern as we require daily medications to help us function and my mother requires to change her ostomy appliance approximately every 4 days. On our last vacation to Florida, my mother required almost daily ostomy changes due to leaks and she almost ran out of appliances. She even had to change her ostomy appliance while in the airport on our way home! She was blessed though without any issues with her ostomy appliance this trip even though she packed 14 changes for our 11 night cruise just to be on the safe side. I took my Lomotil medication daily to help slow my Short Bowel Syndrome to allow me to participate in activities. Unfortunately, Lomotil irritates my intestinal ulcers causing bleeding and risk of lower hemoglobin at a faster rate thereby shortening the length in-between iron infusions and the effectiveness of my daily iron medication. I also have to be mindful of my Lomotil because it can increase my risk of intestinal blockages. My chronic nausea was exacerbated by tour buses and the rocking of the cruise ship at times but overall remained manageable.

We flew into Honolulu on the island of Oahu and spent three days there before the ship left for the

hawaiin ocean
Hanauma Bay
island of Maui. We spent an extra night in Oahu to allow us time to travel to Waikiki so that I could obtain another Hard Rock Café shirt for my collection. While in Waikiki, we enjoyed a seafood dinner on the beach at Hula Grill. While roaming around Waikiki we watched street performers sing and dance. The following day we spent the morning at Pearl Harbor to visit the memorials and museums there before embarking upon the cruise ship. On our third day we went on an island tour that took us to the National Memorial Cemetery of the Pacific, Hanauma Bay, and Halona Beach Cove and Blowhole.

Me doing IFly
The next day was a sea day and we cruised by the Napali Coast on Kauai - a sacred place to Hawaiians with a mountainous shoreline. While at sea my mother and I participated in IFly Indoor Skydiving on the ship. We were both nervous as we are not particularly thrill seekers but by the end of it we were glad we had the experience. One participant was in the tunnel with the instructor at a time and the instructor communicated through hand signals on what we needed to do in order to maintain stability in the air. He didn't let us float too high or too low and ultimately it was a fun experience. The ship also had a flowrider surf machine available at no additional cost to passengers but that was beyond my mother's and mine's interest level although it was enjoyable to watch others attempt and even succeed at the flowrider.

We arrived in Maui for two days allowing us time to attend a luau where we learned about and

water features
Maui Plantation
watched Hawaiian dances, clothing, and traditional Hawaiian foods. We roamed around Lahaina, Maui looking at local shops, restaurants, and museums. For our second day in Maui, we went on a tour taking us to the Maui Tropical Plantation where there were beautiful gardens and a restaurant with gift shop, Kepaniwai Park that showcased houses and gardens of various nationalities that have become a part of Hawaii, and McGregor Point and Hookipa Beach Park on the North Shore where we saw giant sea turtles on the beach and surfers amongst the waves.

hawaiian ocean
Victoria, British Columbia
We spent the next 5 days at sea making our way to Victoria, British Columbia. Once there we spotted whales, seals, sea lions, an otter and two bald eagles while on a whale watching tour before heading to Vancouver, British Columbia. On our way into Vancouver we passed under a bridge where we were greeted by onlookers and the media as our particular cruise ship was the largest ship to pass under this particular bridge and was the first time this particular cruise ship had done so. It was an exciting moment onboard as it seemed all 4,500 cruise passengers gathered on the upper decks to watch this moment. It was hard not to get caught up in the excitement of all the other passengers and onlookers. We were allowed to disembark in Vancouver but decided not to go sight seeing as we had completed a tour of historic sites in Vancouver on our previous cruise to Alaska.

The next morning we easily made our way to the airport as taxis were waiting for us and we had a smooth flight home. I had always wanted to visit Hawaii and I'm grateful I had been able to share this experience with my parents.

Tuesday, April 16, 2019

I Still Grieve My Marriage Years Later

Today is my wedding anniversary. It would mark 8 years of marriage and 10 years together. As I look back over the memories that my wedding anniversary brings forth I remember that within a month of dating, I knew I was going to marry him. I had found my perfect match to create a life with full of our hopes and dreams. I had finally found the one for me.

Our wedding was perfect for us. We had a Blues Brothers themed wedding that was fun and light hearted. We had details of the movies interwoven into our wedding from handcuffs, converse shoes for the ring bearer, black suits and sunglasses for the men, and dancing down the aisle to Blues Brothers music by every member of the wedding party. I made my dress from my grandmother's wedding dress and my jewelry from that of my great aunt's. There was a lot of thought put into our wedding ceremony and reminiscing on my wedding day still brings me joy as I cherish all the memories of the details of that day.

I made the decision to end my marriage over 3 years ago now. It was a difficult decision to make but I fully accept my decision and I have no regrets regarding that decision. Even though I am no longer in love with my ex husband, I still find myself grieving my marriage in spite of my acceptance.

I was shaken and heartbroken when I awoke from a recent nightmare. I dreamt my ex husband and I were engaged and we lived in a busy, small town. The town was devastated by a plane crash and my ex husband died from smoke inhalation from the fire that was started in the town by the crash. My life had been torn apart before we were even wed.

I realize this dream was symbolic of the loss of marriage I experienced with my now ex husband. I can't escape the loss even in my sleep. I find myself wishing circumstances had been different to prevent our divorce. We made a great couple, we were great together until actions caused trust to be betrayed. I was unable to re-establish trust in our relationship, it no longer was a partnership, and I didn't want to live like that with another person. I didn't want to live with the risk of liabilities placed upon me by others. But I still wish things had turned out differently.

With the loss of my marriage also came the loss of goals, dreams, and a lifetime together. Events without my partner remain emotionally difficult. For example, vacations that would have been taken with him are now taken with different people or by myself. This year will be the first cruise I've ever taken without my ex husband. Traveling to new places has been emotionally difficult without him. I relied on him to navigate and drive us where we needed to go when visiting new places.

My parents recently celebrated their 40th wedding anniversary. As happy for them as I am, such celebrations remind me of what was lost within my own marriage. Not only were dreams lost but the future was lost as well. Now I create my own future without him, without a partner. I still long for a future spent with a lifetime partner, even though it will be with someone different. I was fortunate to find someone I wanted to spend my life with once but will I be so fortunate again? I don't know the answer to that. I hope I will be but not everyone finds someone to spend their lives with and so it may be the case for me. Only the future will tell.

In the meantime, I continue to work on my own personal growth and acceptance of how my life is now post divorce and the countless possibilities that the future may hold. I cherish the interpersonal relationships I have with others even if those are not romantic relationships. I hold tight the good memories of my wedding and that of my ex husband as I look to the future and what it may hold for me.

Tuesday, April 2, 2019

Exploration and Rare Disease Awareness in Philly

I recently was provided the honor of serving as a member on the Familial Adenomatous Polyposis (FAP) Patient Advisory Board Meeting in Philadelphia, Pennsylvania and was able to explore this historic town while I was there.

Independence Hall
I arrived on a Thursday afternoon and met with a fellow FAP patient and friend who I had the opportunity to meet in 2017 at the Hereditary Colorectal Cancer Family Day. Our hosts had arranged our stay at the Windsor Suites. My friend and I spent the afternoon and evening walking around Philadelphia. We visited the Independence National Historical Park where we saw the Liberty Bell, President's House remains, and Independence Hall. For dinner we visited the Reading Terminal Market where we enjoyed official Philly Cheesesteaks. The Reading Terminal Market is one of the largest and oldest public markets dating back to at least 1893 where you can find a variety of food merchants, locally sourced produce and meats, and vendors with various items for sale.

Liberty Bell
The following day we joined the FAP Patient Advisory Board Meeting. Janssen Pharmaceuticals and CISCRP (Center for Information and Study on Clinical Research Participation) came together with a local marketing research data collection company to discover the experiences and perspectives of FAP patients and their caregivers. The panel of participants included a mix of 10 patients/caregivers as well as doctors, clinical scientists, researchers and Global Trial Leaders associated with Janssen and CISCRP. It was a unique opportunity to not only meet others living with FAP but also a chance to share our experiences and opinions with these professionals for future clinical trials for FAP.

After the completion of the meeting, my friend and I explored the

Mütter Museum, at the College of
Mütter Museum
Physicians of Philadelphia, which showcases medical history. The museum houses collections of bodily specimens, models, and medical instruments. Among the two story exhibit rooms full of interesting objects, we saw Mega Colon, a colon with FAP, and even slices of Albert Einstein's brain! Photography was not allowed in the museum unfortunately. Outside was the  beautiful and serene Benjamin Rush Medicinal Plant Garden where more than 60 different medicinal herbs grow. Following dinner again at the Reading Terminal Market, we joined a few of our newly met FAP friends to visit over drinks before we all headed our separate ways that night or the following day.

Philadelphia City Hall

It was a whirlwind visit to Philly but it was full of historical significance not only of the United States but also an opportunity for patients and caregivers to make a difference in the future of clinical trails for the treatment of FAP. It was an honor to have our voices heard and to meet an amazing group of individuals fighting their hardest against this disease.

Monday, March 25, 2019

Overreactions to Chronic Illness

I've noticed as I've re-entered the dating world following my divorce a common trend among those who may be labeled as healthy themselves and have a limited experience of chronic illness - they tend to overreact to my health symptoms. I realize this comes from a place of concern and uncertainty regarding what they should do to help me and I would prefer their concern than for them to dismiss my symptoms. But I can't help but almost laugh to myself at their overreactions all the same.

One partner asked to call an ambulance whenever I wasn't feeling well. Others regularly advised me to see a doctor or go to the ER when I'm ill. They haven't had the experience yet to trust that I know when I need to seek help and when I don't. I imagine they feel helpless as they listen and watch me suffer from my symptoms as well. Those of us with chronic illness have learned our bodies over time and we can tell when professional intervention is necessary and when we can let it slide until the next check up appointment.

For instance, I was having early symptoms of a possible intestinal blockage. My partner encouraged me to go to the doctor. I haven't had a multitude of intestinal blockages but I've had enough to know that seeking medical attention at this stage wasn't necessary as I wasn't even sure I was having an intestinal blockage yet. I was able to still function and I wasn't having any of the for certain signs of an intestinal blockage - just a concern that I could be starting to. Even if I was having an intestinal blockage, I try the various tricks recommended to try to help the intestinal blockage pass before heading to the ER.

From time to time I feel very weak and it is even difficult to walk or talk. I end up staring off into space, not responding to those around me until my energy can be restored. This would send one partner into a scare and he would threaten to call an ambulance. Anyone who knows me knows that one of the last things I want done is for an ambulance to be called for me. It has yet to be necessary and I don't want the expense of an ambulance ride to the hospital when someone could drive me to the hospital if needed. In this case I had to muster all my strength to tell my partner no to an ambulance and walk to the bedroom to rest.

My father has helped provide care to my mother for the majority of their marriage and to me for the majority of my life. He is relatively healthy but through his experiences as a caregiver, he's learned to trust my mother and myself. He acknowledges that he doesn't know exactly how we are feeling or what our tolerances are for pain and other bothersome symptoms. He's resigned himself to follow our lead - he offers assistance and helps us is whatever ways he can - and he waits for us to tell him when enough is enough and we need help obtaining medical intervention. He has told me how helpless he feels when we're ill feeling but he realizes we will let him know what kind of help we need as we know our bodies and limitations better than anyone.

If I were to call the doctor or go to the emergency room every time I felt sick, I would be calling or be there every . single . day. And unfortunately, that's how it is with a lot of us with chronic illness. We don't experience regular reprieves of bothersome symptoms. We feel ill, we are tired, and we are in pain the majority of the time. We have learned what is normal for our bodies and what is not. We have learned to live with symptoms to the best of our abilities and we can tell when those symptoms increase to the point of requiring additional medical intervention. The sad truth is that we are lucky if we have found a way to manage our symptoms for the most part. It may be too much to ask for a cure but management may be a real possibility.

Friday, March 8, 2019

Managing Anxiety and Depression

life's a polyp

It's difficult to not experience anxiety or depression at some point in life, particularly when dealing with a rare disease or other chronic illness. Such feelings at times are normal to experience but when they become long term feelings is when they can become more inhibitive or detrimental.
mental healthIt's helpful to understand the cyclical relationship between thoughts, mood, and behavior and how they interact with one another. It doesn't matter where you start in the cycle, each segment will affect the rest.
For example, if I have the negative thought that my health will not improve leading to depressive feelings which may manifest in behaviors such as isolation and loss of interest in activities. These behaviors feed into new thoughts such as I'm never able to do anything which may make me feel more depressed and engage in increasing depressive behaviors.
Each part acts as fuel, reinforcing the cycle to continue. And so this is the same for other moods such as anxiousness or happiness.
The easiest way to change the cycle is to stop a negative thought in its tracks and replace it with a more positive thought. However, negative thoughts occur so automatically that we often fail to realize that we had a negative thought. It helps to know what kind of negative thoughts to look out for in order to start recognizing the occurrence of a negative thought.
  • All or nothing thinking. Looking at situations as black and white with no middle ground. Either I can do everything or I can't do anything.
  • Overgeneralization. Applying one experience to all future expectations. I can't do anything now or ever.
  • Filtering out or diminishing the positive. Only recognizing the negative, ignoring the positive or excusing why the positive didn't count. I was able to do something this time but that's not how it usually is.
  • Jumping to conclusions. Drawing negative conclusions or expectations without any evidence to be the case. I won't be able to do anything anyway, so why try.
  • Emotional reasoning. Belief that what you emotionally feel is the reality of a situation. I feel like I can't do anything so therefore I can't nor will be.
  • Expecting perfection. Holding yourself to a strict level of standards with no room for error or difficulty living up to unrealistic expectations. I can't do it the way I want so I can't do it.
  • Personalizing everything. Taking others words or actions personally even if they were not directed at you. They didn't invite me to their activity because they don't care about me.
Familiarizing ourselves with the types of negative thoughts can help us to recognize when we have a negative or discouraging thought. If you have a bothersome feelings, ask yourself the following questions:
  • What happened that is bothering me?
  • What were my first thoughts about it?
  • How did I feel when it happened?
  • What did I do?
  • What happened as a result?
  • Am I satisfied with that outcome?
These questions will help us to understand our thoughts and feelings associated with an experience or situation. Once we understand what is going on behind the scenes in our mind, we can tackle the problem and work toward a more positive experience. This is particularly helpful by changing or reframing the identified negative thought when such an occurrence occurs.
Instead of thinking "I can't do anything because I'm sick", we can reframe this discouraging thought to "I'm not able to do as much as I would like to right now, but tomorrow I may be able to do more than I am today".

Negative thoughts are not easy to change over night. We engage in negative, discouraging thoughts so abundantly as human beings that it has become an automatic habit. But like with any habit, habits can be changed. It just takes continued effort and determination to create a new habit. So don't give up, it may take some time but it will be helpful for mental well-being to continue such efforts.
Changing behaviors can also help to enhance positive thoughts and emotions. Often when we are anxious or depressed we will isolate, decrease activity levels, over sleep or not sleep, and increase or decrease food intake. There are a number of behaviors that we can engage in to help calm the mind and those bothersome feelings.