Monday, July 8, 2019

Birthday Struggles

birthday balloons girl running

My birthday is a bit of an emotional roller coaster at times for me and has become increasingly difficult for me to enjoy as the years pass by. I shared earlier this year about how my birthday and New Year's start a period of mourning as my fears about the future are intensified. Over time, birthdays have changed from a triumph of survival to a period of mourning.


Often individuals enjoy taking off from work on their birthdays as a way to celebrate. I prefer to work on my birthday so that I can be surrounded by coworkers and celebrate with them versus being home alone on my birthday. This got me thinking and I realized that even as a child, I felt that my birthday wasn't anything special - it was insignificant - which led me to feel that I too was insignificant. I didn't deserve anything significant to occur on my birthday and it was significant when someone remembered to wish me a happy birthday. As the mourning of my birthday years worsens with time, I particularly do not want to be home alone allowing myself to wallow in my mourning.


Since I entered a brief period of depression surrounding my birthday last year, I expected the same to occur this year. I was pleasantly surprised with myself when this didn't occur - at least to the depth of last year's birthday. I struggled in the morning with feelings of sadness and even welled up with tears at times but I was able to fight off the tears and turn the day around by the afternoon. I pushed away my fears about the uncertainty of the future and instead I enjoyed my the birthday lunch my coworkers provided me and appreciated all the birthday wishes from loved ones and even strangers online. I thought I would be in an emotionally fragile state once I got home and asked a friend to spend some time with me. But once again, I surprised myself and was comfortable in my alone time.


Although the sadness I tend to experience around my birthday lessened significantly, I also didn't experience a surge of triumphant feelings about survival either. And that's okay. I was content with a lessening in sadness allowing me to more greatly enjoy sharing my birthday with my loved ones.


Whatever holidays serve has painful reminders to you, may the next be easier. Sometimes our fears and mourning never fully dissipate but they can lessen and we can still enjoy the good times, particularly with others. It can help to utilize coping tools to reframe our negative thoughts to allow us a reprieve.


Here's to an even better birthday next year.

Wednesday, June 26, 2019

5 Steps to Take When Coping with Grief and Chronic Illness

grieving woman

This is a Guest Post by Elise

There are good days and there are bad days when dealing with a chronic illness. The fact is that you just don't know what will happen tomorrow, or even an hour from now. But, having a chronic illness or losing a friend to one does not mean there is nothing you can do to manage the pain and grief. "Manage" is the key word. How do you manage your grief?

What is Grief?

Grief is a natural emotional response to loss, brought on by loss. Small or significant, it is okay to grieve and for most people the more significant the loss the more intense your grief. How you grieve and how long is up to who you are. Factors such as your personality, life experiences, faith and your coping mechanisms all play a role.

How to Cope with Grief

Coping with grief can be difficult, so here are five first steps to take when you have a chronic illness or are dealing with the loss of a friend who you've lost from a chronic illness.

  • Express your Feelings
If you don't express your feelings, you are bottling those feelings in and possibly doing yourself an injustice. This doesn't mean you need to cry on the shoulder of a stranger when sad or yell at your colleagues when angry, but, it is okay to tell a friend, family member, or coworker ho you are feeling, that you need the comfort of someone near you, or to be left alone for some time.

  • Take Care of Your Health
Turning away from your health could mean no longer exercising, eating poorly, or losing routine in your life. Both physical and mental health can be at risk during your grieving process, so taking time to focus on your health is important. One way to start is by creating a nighttime routine such as a bath or shower, prepping your clothes for the next day and reading a book to fall asleep. Adding small things such as essential oils, calming music or even adding breathing and meditation to your routine are great ways to relax your body and mind.

  • Understand the Inevitability of Bad Days
Bad days are going to happen. You may wake from a restless night, be plagued with difficult thoughts, or you're just having a bad day. All of these are legitimate, and when grieving you will inevitably have difficult days. Understanding that these days will occur will not make your grief fall to the wayside, but you will know that tomorrow may be better.

  • Don't Forget - Moving on Doesn't Mean You Must Forget
A common myth about grief is that if you try to move on you must forget. If you lost a friend, it means you should put thoughts of that friend aside. If you are coping with a chronic illness this might mean you should forget the good times before your illness. This simply is not true. There is room in us to both manage the grief as well as remember our loss.

  • Seek out Support
Support groups, therapy and confiding in someone you trust are not easy to do for many people. When you grieve these can be even more difficult. However, knowing that support is available to you is important. Understanding that you are not the only one (often the case when grieving) can be encouraging and help you cope with your emotions and pain.

Grief will affect everyone at some point in their life, but when dealing with a chronic disease, yours or that of a loved one, your grief can take longer to manage. However, it is important to know that there are coping solutions to help you keep yourself moving forward.

Elise is a freelance writer located in North Carolina that regularly covers health and wellness topics for Mattress Advisor. She is especially passionate about understanding and researching mental health and loves to educate others on the topic through her writing.

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.


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
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.